tag:blogger.com,1999:blog-11213958903534044102024-03-13T14:04:06.439-07:00Danny SauerAnonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.comBlogger74125tag:blogger.com,1999:blog-1121395890353404410.post-92196328258783404252015-05-25T19:36:00.001-07:002015-05-25T19:58:20.794-07:00Meningitis<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">This post written on Monday 5/25/15)</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Wednesday
May 13<sup>th</sup> Danny was admitted to the hospital. He had been having bad
headaches for about a week and the diarrhea had worsened. He has had diarrhea
as a side effect of his anti-rejection meds since transplant, but it got much
worse over the last couple of days before the 13<sup>th</sup>. Danny was on his
way to work at the office in New Orleans and was going to go see the doctors in
New Orleans for a check-up since he hadn’t been feeling well. On his way there,
he vomited in the car and decided to go back home. He called me at work and
said he needed me to come home to help him. I called his nurse coordinator at
Ochsner to discuss his symptoms and she said he needed to be seen that day by
our family doctor. Unfortunately, our doctor was out of the office that day and
the man who takes call for him did not feel comfortable seeing Danny, given his
transplant history. He was directed to go straight to the ER. (these type of
symptoms…headache, nausea, vomiting can be symptoms of rejection). I really
don’t like to be extreme and going to the ER is an extreme thing to do. So, I
called his nurse coordinator to see if she thought it was necessary that he go
and she said that his symptoms are very concerning and that she agrees that he
needs to go. She told me to take him to the Ochsner in Baton Rouge because they
can easily share records and work together between Ochsner Transplant Facility
in NO and Ochsner in BR. We were in the ER for a long time and then it was
decided by the team in NO that he needed to be there for treatment. Danny was
transported via ambulance (I couldn’t drive him myself because of liability
issues for the hospital) to NO, where he has been now for 12 days. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The
doctors began the process of identifying the cause of the headaches, fevers,
diarrhea, and vomiting. They did and continue to do blood work, CT’s, MRIs, x-rays,
and then a spinal tap. The spinal tap revealed viral meningitis, which was a
big scare because then they had to determine the source/cause of that virus.
The connection between his case of West Nile in 2000 is not related to this
virus, even though they are similar viruses that attack the brain area.
Encephalitis (West Nile is a type of encephalitis) is swelling of the brain.
Meningitis (Danny currently has) is swelling of the fluid around the brain. The
doctors said that when he had the transplant, his body basically reset and
forgot that he had encephalitis before…therefore it is an odd coincidence. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The
spinal fluid also revealed a second virus in the brain area, but they still
have not identified the type. After several days of waiting for all test
results to come back, it seemed like Danny’s symptoms were worsening. His
fevers were spiking up to 103F, which is pretty scary. They did a second spinal
tap to see if he was really worsening. He was not…the results were the same. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">At
some point, the infectious disease team, neurology, oncology, and heart
transplant began to think the symptoms were caused by the most recent
anti-rejection he was started on. Apparently in rare cases this medicine,
Rapamune, is hated by the patient’s body so much that it “wages an all out war”
according to the doctors. The result is that the Rapamune actually gives the
patient viral meningitis. That’s good news is that the solution is to take him
off Rapamune, and that’s pretty easy. The problem is that Danny needs to be on
anti-rejection meds and the list of drugs to choose from isn’t very long. They
are currently weaning him back on to a combination of previous ones he had.
They had some undesirable side effects, but certainly none as bad as viral
meningitis! <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Sunday
and Monday night shift were an absolute nightmare with the staff. I’ll get back
to that story at the end of this post...<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">For
the first part of last week we were not seeing much improvement in his
symptoms. He still had pretty high fever spikes and constant diarrhea. The
infectious disease team did every test they knew to do to determine the cause
of the meningitis, however, everything was negative. That led them to the
conclusion that Rapamune is the cause. Another fairly common source of fevers
for patients with lengthy hospital stays is atelectasis or “sticky lungs”.
That’s when the bottom part of the lung collapses a little from lack of deep
breathing that comes with exertion. When the lower part of the lungs collapse,
they sort of stick together a little (hence the nickname “sticky lungs”) and
can cause a little shortness of breath as well as low-grade fevers. The concern
with that is it can develop into pneumonia. The fix for it is using the
incentive spirometer frequently to help open up the lungs all the way. (it
would be great if at this point his primary symptoms of headaches and fevers
could be caused by atelectasis and spinal taps, instead of still having
meningitis, which would mean that Rapamune was not the cause of the
meningitis!) Oncology doctors were following him also, and they believed early
on that Rapamune was the culprit. Neurology was following him to try to manage
the headaches. The question was: are the headaches still from the viral meningitis,
or could they now be from the two spinal taps since the Rapamune has started
leaving his body. The treatment for spinal tap headaches is massive amounts of
caffeine, so Danny has been drinking caffeine powder twice daily in addition to
all the Dr. Pepper he wants! It was the heart transplant team that took the
longest to convince and they have not been willing to send him home as long as
he was running fever. The latter part of last week and over this past weekend
Danny’s fevers have started to decrease in temperature, now usually only
reaching around 100-101…much better than 103! His headaches have lessened in
severity also. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Today
Danny has been really grumpy. He is just ready to go home and get back to life.
He has been trying to work from his bed, but Ochsner has a new firewall that is
blocking his access to things he needs. It won’t even allow me to access the
blog!! Danny was pretty clear with the infectious disease doctor that he was in
a bad mood about still being here and I think she made some things happen. The
plan was tentatively to do a biopsy tomorrow (Tuesday 5/26) to make sure there
is no rejection. The meningitis symptoms also look like rejection symptoms, so
they just want to cover all bases. I don’t think anyone really thinks he’s in rejection,
no blood work has pointed toward that so far, but the only way to be 100% sure
is to do a biopsy. These results also will help the transplant team make good
decisions on what amounts of each anti-rejection meds he needs to be on. Since
Danny has such strong reactions to anti-viral medicines, they don’t want to do
guesswork if they can avoid it. Better to get the medicines right the first
time and hopefully make it as easy on his system as possible. Apparently biopsy
results can give them that type of helpful information as well as showing signs
of rejection or none. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The
biopsy was done today. I think it happened today because Danny was so vocal
with the ID (infectious disease) doctor this morning about wanting to go home.
Anyway, results from the biopsy come back tomorrow. The day nurse told
tonight’s nurse that he might be able to be discharged tomorrow as long as the
biopsy results are okay. I know the transplant team said there was no way he is
going home with a fever, but at this point I think everything is on board with
the meningitis being caused by the Rapamune. If that’s the case, the fever
could last a few more weeks since Rapamune takes so long to fully exit the
body. Danny can deal with a low-grade fever at home! That’s what we hope they
think anyway!!<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">So
the prayer is this…good biopsy results, discharge tomorrow (Tuesday 5/26), no
more fevers, no more headaches!!<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Here
is the account of the gossiping/bullying incident:<o:p></o:p></span></div>
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<span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;"><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;">Sunday night late/early Monday morning
(5/17-5/18)<o:p></o:p></span></span></div>
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<span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;"><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;">Beginning of night shift on Sunday (5/17) was
extremely loud. Danny’s room is directly across from the nurse’s station. It
sounded like the night shift staff was having a party outside his door
(Cheering, laughing really loudly, talking loudly). After a while, Danny pressed
the nurse call button and asked them to please be quiet. (He had been diagnosed
with viral meningitis and his headaches were horrible and he was also running
fever). The person who answered the phone was quiet for a moment and then said
“ok”. Through the door Danny and I heard her say in an ugly tone of voice “the
patient wants y’all to be quiet”. They laughed about it and did not change the
noise level. The other issue at that moment was the person who answered the
phone at the nurses’ desk didn’t press the button with her finger before
setting the phone into the cradle. In the patient’s room, it sounds like she is
slamming the phone down loudly and echoing through the speakers. <o:p></o:p></span></span></div>
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<span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;"><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;">Many hours later, a PCT (patient care
technician…nurse’s aide) came in for a vitals check. She said his temperature
was 103.1. Danny asked her if she would let his nurse know and she said “yes”.
(protocol for a fever that high is the PCT immediately tells the nurse who
immediately comes in the room, usually with another nurse or the charge nurse
(CN). About 20 minutes passed and the nurse did not come in. So, Danny pressed
the nurse call button and asked to see his nurse. The person who answered said
“May I tell her why?” and Danny said “No, its personal”. He didn’t have a reason
to say that other than he was frustrated that he felt so badly, his nurse
hadn’t come yet, and he didn’t want to talk to the lady on the phone. He asked
me to look at the time and 25 minutes later, Danny decided to call the Code H
number, which is for Code Help…a paper in every hospital room with a number to
call if the patient feels his/her needs are not being effectively met. Danny
told the person on the phone he had 103 fever and hadn’t been able to get in
touch with his nurse and he wanted to know how to do that. <o:p></o:p></span></span></div>
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<span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;"><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;">About 10-15 minutes later the charge nurse (call
her “D”) came in and wanted to understand why Danny called code H when she
hadn’t been contacted yet. (the appropriate chain of command would be nurse,
CN, then Code H). Danny said he had called for the nurse, she never came, he
didn’t feel good, and had 103 fever. She said, “I doubt your fever is that high
but let’s check”. He said, “wait, I’m confused, why would you doubt my fever?
Your PCT checked it and said that was the temp.” D said that some of the thermometers
the PCT’s use aren’t always accurate and that’s why the nurses come in to
verify the temps. Danny said “I don’t understand why a hospital has
thermometers on the floor that you are saying don’t work!” He was really upset
about that and wanted to know why if they knew it was broken why they didn’t
recheck it quicker instead of letting him lay there and worry about 103 fever
for 45 minutes. She said “sir, that’s why I’m in here right now, to double
check your temp”. <o:p></o:p></span></span></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;"><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;">That’s
not true…she was in there at that time specifically because Danny had called
Code H and those people had the CN go see the patient. <o:p></o:p></span></span></i></div>
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<span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;"><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;">Then their conversation went back to the noise
issue at the beginning of the shift somehow. Danny was telling her he was
frustrated at the lack of professionalism on this shift starting with the party
at the nurses station at the beginning of the shift, PCTs not reporting 103
fevers to the nurse, nurses not responding to a patient’s call, slamming down
the phone in his intercom, and then using broken equipment in a hospital. She
said “sir, I was the one who answered the phone when you complained about the noise
so I know about that complaint.” She said because they are short staffed, many
times she sits at the desk and answers the phones. So then Danny got more
irritated and said then obviously the problem on this shift is your lack of
leadership skills since you’re telling me you are the one sitting right there
at the desk taking all these calls and not doing anything about it. D just said
she was sorry he felt that way and took his temp again and said it was 101 and
that he didn’t have anything to worry about. She left shortly after that and by
this time it was time for me to leave to go back to BR for work. <o:p></o:p></span></span></div>
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<span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;"><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;">I didn’t know there were continued problems until
I got back to the hospital the following night after work (Monday night). On my
way to New Orleans Danny had me stay on the phone with him and listen…not talk
at all, just listen. I had no idea what was going on and honestly was concerned
that his fever was high enough that he was delirious. When I got to his room
his nurse, “A”, was in the room with him. (that’s the same nurse he had Sunday
night). I met her in the hallway and asked if everything was okay because he
had been acting weird on the phone and I was concerned about possible delirium
with a high fever. She said she hadn’t noticed anything weird. Danny’s IV
wasn’t working anymore so “A” had to put in a new one. She tried 3 times, with
no success. She called another nurse in to try to start the IV and she gave 2
attempts with no success. At that point they called the charge nurse (different
one from the previous night whom Danny had conflict with…we will call her “C”),
“C” in to start the IV. She was successful the first time. While these nurses
were in the room, the talk was pleasant and I was chatting with them. I did not
sense any tension or conflict at all. After the IV was started and the 3 nurses
left, Danny said, “they did that on purpose. Those 2 nurses messed up on
purpose to try to hurt me. They hate me and they’re trying to hurt me.<span style="mso-spacerun: yes;"> </span>I can’t eat or drink the food they give me
because I don’t know if they’re spitting or peeing in it!” He had me check in
his pitcher of water to see if it looked okay, which it did. I told Danny he
had to be confused and there was just no was they hated him and tried to calm
him down. I finally told him that even if they did hate him, they wouldn’t hurt
his food or water because they wouldn’t risk their jobs for him. Overall, I
didn’t believe what he was telling me and really was concerned about his mental
health. <o:p></o:p></span></span></div>
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<span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;"><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;">Then a PCT came in for a routine vitals check.
She was pretty quiet. As she was leaving Danny said “Ma’am, may I have some
fresh water and ice please?” she said “ok” but when she walked out and the door
was shut she said (because I heard her clearly) “He wants water now. He thinks
he gets a treat?” (in that really obnoxious high-pitched tone). I was lying on
the couch and sat up immediately and asked Danny if he heard that. He said,
“Yes, Tricia you heard exactly what she said. That’s what I’m trying to tell
you. They’ve been gossiping about me all night and I can’t take it anymore.” My
first reaction was to follow the PCT out into the hall and give her a piece of
my mind…but then I decided on another route. I waited in the hallway and when
the PCT returned with the ice water, I asked her if I could please speak to the
nurse. “A” met me in the hall and I started by saying “What’s going on with my
husband?” she said she didn’t know what I meant and so I told her what I had
heard the PCT say about the water. “A” acted shocked and horrified. She said
she had no idea what I was talking about or who would do anything like that. We
ended up going in the conference room while I explained the whole story to her,
crying of course. I told her how Danny had been scared to eat or drink that
night while I was gone because he was scared that the staff (nurses, PCTs…he
didn’t know who) were trying to hurt him by spitting or peeing in his drink.
When I got back to the hospital he was huddled in the bed, scared and just
about having an anxiety attack. I told her that Danny had been hearing people
gossip about him after the door was shut and were saying terrible things. I
said that I didn’t really even believe him until I heard it myself. She asked
me if we could get the charge nurse in there to help work it out and I said “what’s
really the point because she would just be another person to go back and laugh
at both of us now.” The nurse wanted me to believe that she wasn’t involved and
didn’t have any knowledge of any of it. I said I really wanted to believe her
because I wanted to believe the best in everyone, but this is really hard. We
used to feel like Ochsner was a second home and always feel safe and good when
we are here because the care Danny receives has always been amazing. But now
really what I want to do is take Danny and leave. <o:p></o:p></span></span></div>
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<span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;"><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;">At some point the charge nurse came in, I was
grateful to see that it was not the same one Danny had the conflict with. I
explained the whole story to her again and she was truly horrified. By that
time, I finally believed the nurse wasn’t involved either and had no knowledge.
The end result is that I wanted to find a resolution and move forward. We
agreed my job would be to make Danny believe that he can eat and drink safely.
Her job is to get us back to a place where we feel safe at Ochsner and that it
feels like our second home again. She said she needed a couple of days to do
everything she needed to do on her end to fix the problem and that she would
keep in contact with me. <o:p></o:p></span></span></div>
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<span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;"><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;">I haven’t heard from her again about the
situation, however, we have not seen the same PCT’s, nurses, or charge nurse.
The care Danny has received has been back to the high standard in which we are
accustomed. I would love to know how it has been handled, but I guess I don’t
need to as long as we don’t experience it again. Here’s the list Danny made
about what he heard on the two night shifts…<o:p></o:p></span></span></div>
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<!--[if !supportLists]--><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri;"><span style="mso-list: Ignore;">•<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><!--[endif]--><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;">Don’t
worry he doesn’t have a PCT tonight because I’m going to handle that<o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none; text-indent: -.5in;">
<!--[if !supportLists]--><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri;"><span style="mso-list: Ignore;">•<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><!--[endif]--><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;">On
first vital check, I told somebody I wasn’t feeling well<o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none; text-indent: -.5in;">
<!--[if !supportLists]--><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri;"><span style="mso-list: Ignore;">•<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><!--[endif]--><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;">They
left and told everyone to be quiet in jokingly manner and stated that I wasn’t
feeling good<o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none; text-indent: -.5in;">
<!--[if !supportLists]--><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri;"><span style="mso-list: Ignore;">•<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><!--[endif]--><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;">Some
background noises were strong and said they didn’t sign anything to be quiet.
He will have to get over it<o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none; text-indent: -.5in;">
<!--[if !supportLists]--><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri;"><span style="mso-list: Ignore;">•<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><!--[endif]--><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;">From
that period forward the night because worse than anyone could imagine<o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none; text-indent: -.5in;">
<!--[if !supportLists]--><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri;"><span style="mso-list: Ignore;">•<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><!--[endif]--><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;">When
somebody came in with Tylenol they said to take it for my fever and I would be
eligible for pain medicine in about 6 hours.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none; text-indent: -.5in;">
<!--[if !supportLists]--><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri;"><span style="mso-list: Ignore;">•<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><!--[endif]--><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;">She
then went to pour me a glass of water but I refused and opened a Boost as I was
afraid that this was all in her plan.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none; text-indent: -.5in;">
<!--[if !supportLists]--><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri;"><span style="mso-list: Ignore;">•<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><!--[endif]--><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;">Upon
leaving the room, somebody said wow we have a smart one in there as he not
drinking anything but Boost: Red boost at that. Background noise was negative
as some made comments that there was an ‘X’ in my chart and that they would
continue to deliver the red boost on my diet plans. <i style="mso-bidi-font-style: normal;">(what is the deal with the red Boost? He is still receiving the red
Boosts on his trays and is drinking them…is red a problem for Danny for some
reason? Why are the mystery ladies making such a big deal about the type of
Boost?)<o:p></o:p></i></span></span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none; text-indent: -.5in;">
<!--[if !supportLists]--><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri;"><span style="mso-list: Ignore;">•<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><!--[endif]--><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;">Background
chatter seemed to be okay with that because I can only order one more time –
then what is he going to do? Somebody then said he hasn’t thought that far.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none; text-indent: -.5in;">
<!--[if !supportLists]--><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri;"><span style="mso-list: Ignore;">•<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><!--[endif]--><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;">There
was discussion about they could change my diet and they all agree that would be
a way to show him who is in charge.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none; text-indent: -.5in;">
<!--[if !supportLists]--><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri;"><span style="mso-list: Ignore;">•<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><!--[endif]--><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;">Somebody
said that all this was too much and they were done – gonna quit. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none; text-indent: -.5in;">
<!--[if !supportLists]--><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri;"><span style="mso-list: Ignore;">•<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><!--[endif]--><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;">They
were told to really think this through because this only a minor obstacle.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none; text-indent: -.5in;">
<!--[if !supportLists]--><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri;"><span style="mso-list: Ignore;">•<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><!--[endif]--><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;">Another
person said nope going to take care of this now. She then called her buddy at
Code Help and told them that all was a racist thing and to think nothing more
of it.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none; text-indent: -.5in;">
<!--[if !supportLists]--><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri;"><span style="mso-list: Ignore;">•<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><!--[endif]--><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;">Throughout
the evening remarks were made to people passing by stating that the pre-Madonna
was not asking for anything and wasn’t that amazing because I normally would.
NO water, not ice, nothing. Giggly about all that and everyone was in agreement
that I am complicated, racist, and tries to get his way. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none; text-indent: -.5in;">
<!--[if !supportLists]--><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri;"><span style="mso-list: Ignore;">•<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><!--[endif]--><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;">What
about when the wife gets here? I’m not worried about that; I can handle
her. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none; text-indent: -.5in;">
<!--[if !supportLists]--><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri;"><span style="mso-list: Ignore;">•<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><!--[endif]--><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;">Tricia
heard: Danny said to a PCT “Ma’am, may I have fresh water an ice please?” She
said ok and after the door shut she said “He wants water now. He thinks he gets
a treat?”<o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-left: .5in; mso-layout-grid-align: none; mso-list: l0 level1 lfo1; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none; text-indent: -.5in;">
<!--[if !supportLists]--><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri; mso-fareast-font-family: Calibri;"><span style="mso-list: Ignore;">•<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><!--[endif]--><span style="font-family: Calibri; font-size: 14.0pt; mso-bidi-font-family: Calibri;">That’s
when Tricia spoke to “A” about what was going on and the charge nurse,
“C”. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; mso-bidi-font-family: Calibri;"><span style="color: red;">Danny believes that the main voice he heard in
the gossiping was that of the charge nurse, “D”. I (Tricia) was not at the
hospital for the majority of the incident and the only thing I heard first hand
was about the water being a treat…and a PCT said that. I don’t know if “D” was
in earshot or not.<span style="mso-spacerun: yes;"> </span>I would like to
believe that the charge nurse that night had no knowledge or involvement.<span style="mso-spacerun: yes;"> </span>I would prefer to believe that it was only
the PCT’s involved. </span><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; mso-bidi-font-family: Calibri;">We want to know how the situation has been
handled thus far and what assurances there are that this won’t happen in the
future to us or any other patient. We are not in the least bit racist, and have
not ever treated anyone at Ochsner poorly or with disrespect in any way. I
assume that when Danny called Code Help that night, it upset some people and
the gossiping/bullying toward him was the backlash. In retrospect, Danny
definitely should have asked to speak to the charge nurse and tried to solve
his problems before calling Code H, but he didn’t. Regardless, he should not
have been talked about that way and made to feel unsafe. <o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; mso-bidi-font-family: Calibri;">This evening I spoke to the charge nurse who
assured me she would handle the situation. She feels like she has handled it
and though I could tell she didn’t feel comfortable giving me specifics, she
did say that some people were written up. I told her that since I had talked
with her the staff has been amazing and back to the high standards we had come
to know. At her request, I will give her a copy of this written account of the
incident, but hopefully it has all been resolved and will not happen again to
any patient! <o:p></o:p></span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; mso-bidi-font-family: Calibri;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; mso-bidi-font-family: Calibri;">Some people have asked if we still need monetary gifts. Yes! Danny's medical expenses are ongoing and will be for the rest of his life. Danny and I believe that the Lord is our provider. He uses jobs and traditional sources many times to provide the money we need. However, sometimes the Lord uses gifts from people. If you feel led to donate money, I can tell you it is a blessing and and answer to prayers, and will be used for medical purposes. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large; mso-bidi-font-family: Calibri;"><br /></span>
<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif; font-size: large;">Here's how to give money:</span><br />
<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif; font-size: large;">Go to <a href="http://www.paypal.com/">http://www.paypal.com</a></span><br />
<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif; font-size: large;">Click on "send" and then follow the prompts, You will need to enter your email & password (you must create a paypal account) and then our email which is: helpdannysauer@gmail.com</span><br />
<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif; font-size: large;">You can also send money to our address:</span><br />
<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif; font-size: large;">Daniel and Tricia Sauer</span><br />
<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif; font-size: large;">10901 Grace Lane</span><br />
<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif; font-size: large;">Baton Rouge, LA 70817</span><br />
<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif; font-size: large;">God Bless You! Thanks for reading and for praying for us.</span><br />
<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif; font-size: large;">~T</span><br />
<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; tab-stops: 11.0pt .5in; text-autospace: none;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
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Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com0tag:blogger.com,1999:blog-1121395890353404410.post-59304747757332295082015-04-10T01:14:00.001-07:002015-04-10T01:14:10.472-07:00The Good, The Bad, The Ugly<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The Good:</span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">It's been about 16 months since Danny's heart transplant and about 3 months since his incisional hernia repair. All incisions are healed with no further complications. He recognizes that he is getting stronger and is able to do more and more. Danny works from the office more than he works from home now. He has not had rejection and all looks good from the doctor's perspective with a few minor issues...The transplanted heart came with a small amount of blockage in the artery so they are watching the possible increase in that closely (so far no change). They've switched him to a different immunosuppressant (one of the ones he will take forever) that works better with blockage for whatever reason. The negative side of this new medicine is that it inhibits healing...so injuries will be harder to heal from. But, that's not really a big deal in the grand scheme of this whole thing. Overall, everything is just fine!</span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The Bad: </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The 2 immunosuppressants he will take forever have some really hard side-effects that are worse for some more than others. Danny is a worse one! The meds cause him to have severe, uncontrollable, and rapid onset of diarrhea. Danny will feel better for 2-3 days and then feel like he can't be far from the bathroom for a couple of days. He was really hoping that the GI symptoms were caused by the incisional hernia even though he was told there was no connection (wishful thinking doesn't hurt I guess!) and has had a really hard time coping with the reality that he could have these negative side-effects forever since these are forever medicines. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny has new insurance through his work (having insurance through work definitely goes in the GOOD category!) and it has been a tough transition. The most recent issue was when his newly assigned "case manager" called him to tell him about the side effects he will have with his medicines and also to let him know that he has an expected life-span of 8 years from now. Danny is already struggling emotionally with all of this and that didn't help. I won't spend anymore time writing about that lady...I'm sure our feelings about her phone call are the same as anyone reading this!!</span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The Good:</span><br />
<br />
<ul>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Better to be alive with bathroom troubles than not alive.</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">God can heal Danny from head to toe...make his new heart perfect, make side-effects go away, whatever! God can even completely heal Danny's body so that he doesn't even need immunosuppressant medicines. All of that is easy for The Lord, and that's definitely good! </span></li>
</ul>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The Ugly:</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I started this blog to have an easy way to keep family and friends updated in an easy way. I had no idea it would be so cathartic for me and I certainly had no idea so many people would read. Now that I know these things, I keep writing because it helps me feel better, but it's also a way to prayer requests out to a lot of people who will pray...and the power of prayer is...powerful! (lol) I said all of that because I don't want people to feel sorry for us. I hear people say how hard this all is for us and how strong we are. That's not it. I"m not strong. Today has been so hard that I'd like to get in the fetal position and cry. Not strong. But that's okay because it's in my weakness that God is strong. Better said: in my weakest places is when I feel God's strength the most because I need it the most and so I recognize it. It's not that God is only strong when I am weak...He's always strong. It's that I forget that I need His strength when I'm not weak. So, the truth is that I'm thankful when I'm in a place of weakness because I never want to forget how strong He is and that I need His strength instead of mine. That's the ugly transparent reality of me and a lot of us I bet, since we are human after all. To recap...I blog and try to be as real and honest as possible because I need your prayers. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I am so tired. Teaching is a hard job. I really had no idea how hard it would be. I'm blessed with a fair, encouraging, and supportive principal this year and hopefully for many years to come, but that doesn't make the workload less. It's really unbelievable how many hours teachers work and then are still not caught up. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I am so tired. Parenting is so hard! Maggie and Charlie are absolutely amazing and I literally thank God every day for them. I just love them so much it makes me feel like my heart will jump out of my chest. But boy, parenting is hard! To watch them struggle is so painful. I want to fix everything for them but can't, and even if I could I shouldn't because they'd never learn from their mistakes that way. Both kids are struggling with all that goes into a dad who has had a heart transplant. Charlie's struggles come out as stress, anxiety, fear, sometimes anger. Maggie's struggles show up through her school work (It's interesting how two siblings can be so different). I could spend a lifetime saying Why God?? But on the other hand I don't need to because I know that it's through trials that we grow closer to Him and are therefore molded into the image of Christ more and more. Isn't that what we want for ourselves and our children? The problem with parenting is that I can't make Maggie or Charlie use these trials to draw them closer to the Lord. That's why they're struggling...God is trying to draw them even closer to Him. Can I kick them, shove them?? As parents we can teach our kids and pray with and for our kids, but at some point they have to develop their relationship with the Lord on their own. My relationship with the Lord isn't theirs to share. They have to have their own. This isn't about their salvation. John 3:16-18 says </span><span style="font-size: large;"><span style="font-family: Arial, Helvetica, sans-serif; font-style: italic;">"</span><span style="color: red; font-family: Arial, Helvetica, sans-serif; font-style: italic;">For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life. For God did not send his Son into the world to condemn the world, but in order that the world might be saved through him. Whoever believes in him is not condemned, but whoever does not believe is condemned already, because he has not believed in the name of the only Son of God</span><span style="font-family: Arial, Helvetica, sans-serif;"><i>". </i>Assuming they are saved, Maggie and Charlie can be nearer to or farther away from the Lord depending on how much they put into the relationship. That's the way it is for all relationships and to me it's no different with the Lord. When we give God time through reading the Bible, praying, singing, etc...we draw closer to Him. The Holy Spirit who lives in us rises up and feels more alive. When we neglect time with the Lord, we draw away from Him and the Holy Spirit shrivels (at least that's how it feels to me). God never leaves us or forgets about us, we forget about him. We neglect him. So that's why parenting is hard. I can't make Maggie or Charlie draw closer to the Lord. I can teach them how, I can be an example, and I can pray for them. But I can't do it for them. And that's hard. </span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I am so tired. Being a caretaker is hard. Being a wife is hard, but I've found that it's even more so with a sick husband. The thing is that Danny isn't "sick" anymore. He has a new heart that is working just fine and his cuts and scrapes and bruises are all healed up. But, he still hurts, feels old, and has major bathroom issues. It's so hard to have the words to say "let's get up and live life" without sounding uncaring about the very real struggles he faces. I don't know how many more years Danny has. I hope it's at least 40. But, I do know I don't want to waste any of them being upset or sad about the negatives associated with transplant. I want to rejoice and be glad! I want to celebrate life! I want to enjoy our children while they are still at home! I want to learn how to ballroom dance with Danny. I want to take walks and have picnics. I want to laugh and be silly. I want to enjoy the sunshine and the rain. I just want peace and joy, and I want that for Danny too. I'm worried he believes that nurse lady who told him he will probably die in 8 years. She is not the one who determines his days. Pray with me that Danny will fight his discouragement and fear. Pray we me that the Lord will strengthen Danny and give him hope and joy. Pray for all of us that we are each drawn to the Lord closer and closer because all of these really painful struggles we've walked and are still walking through are worthless unless we run to the Lord as fast as we can and allow him to be our rock, our friend, our strength, our comforter, our champion fighter, our loving father. </span><span style="font-family: Arial, Helvetica, sans-serif;">Lord, help me to teach my children by example instead of words. And Lord forgive me for forgetting you and trying to rely on my own strength. Sharpen us through this fire so that our lives honor you. Make all of this a testimony of your goodness and your faithfulness. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Songs on my heart right now:</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i><br /></i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>Draw me Lord</i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>Draw me Lord </i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>Oh Draw me Lord </i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>And I'll run after you</i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i><br /></i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">and...</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i><br /></i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>You are the strength when I am weak </i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>You are the treasure that I seek</i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>You are my all in all</i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i><br /></i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>Seeking You as a precious jewel</i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>Lord to give up I'd be a fool</i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>You are my all in all</i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i><br /></i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>Taking my sin, my cross, my shame</i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>Rising up again, I bless Your name</i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>You are my all in all</i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i><br /></i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>When I fall down You pick me up</i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>When I am dry You fill my cup</i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>You are my all in all</i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i><br /></i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>Jesus, Lamb of God</i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>Worthy is Your name</i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>Jesus, Lamb of God</i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>Worthy is Your name</i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i><br /></i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">~Tricia</span></div>
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Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com1tag:blogger.com,1999:blog-1121395890353404410.post-32745316036082366852015-01-22T08:33:00.004-08:002015-01-22T08:33:40.695-08:00Last Chance<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5B9sDd7Hq6nB_NzP-YF9HRiiRkiTCKU7ER6hQfxIcJPqfU-HYIE0C51Rbggbjs3vK184znYWOP8TrUMDqwl4BLlT8VeiUtzVbq2dgau01J-aFSt-i66ImyfOsNhXXkoSuana5XLpYe44/s1600/IMG_3749.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5B9sDd7Hq6nB_NzP-YF9HRiiRkiTCKU7ER6hQfxIcJPqfU-HYIE0C51Rbggbjs3vK184znYWOP8TrUMDqwl4BLlT8VeiUtzVbq2dgau01J-aFSt-i66ImyfOsNhXXkoSuana5XLpYe44/s1600/IMG_3749.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">Abdominal wrap to keep the hernia repair nice and secure.</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikkrQ-a5-Xen3syKFKN4nFCYMi5g98dzadZDgOJSpfDGWyRz3qu_Nfmq2B-gtPcj9YorwSPAJSo5o2eV6q7JMVT6Xb8g4RxQ1xpDkdOX5IhI3vh5mBG6Iuz67RPCtL8iGkXrGgN4-8x3c/s1600/IMG_3744.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikkrQ-a5-Xen3syKFKN4nFCYMi5g98dzadZDgOJSpfDGWyRz3qu_Nfmq2B-gtPcj9YorwSPAJSo5o2eV6q7JMVT6Xb8g4RxQ1xpDkdOX5IhI3vh5mBG6Iuz67RPCtL8iGkXrGgN4-8x3c/s1600/IMG_3744.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">Pads between the abdominal wrap and the incisions.</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZfr3l7XFOUNKbU2s8tDxa4XQfSBfPnISvdqOCfaD8hyphenhyphen_YAOci8XPD5V6Magc44tL4ZB7cWSTHejbkKEPq6DP2QzwfMsy_myEaN8X8wsJEdx8_kxTpF3OkDwQ-zwgTl8Yu1JfePFyuiKc/s1600/IMG_3745.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZfr3l7XFOUNKbU2s8tDxa4XQfSBfPnISvdqOCfaD8hyphenhyphen_YAOci8XPD5V6Magc44tL4ZB7cWSTHejbkKEPq6DP2QzwfMsy_myEaN8X8wsJEdx8_kxTpF3OkDwQ-zwgTl8Yu1JfePFyuiKc/s1600/IMG_3745.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">Small incisions on the outside of where the hernia was. It was through these small holes that the doctor sewed the mesh patch to muscle. The pain isn't from the incisions. It's on the inside from the mesh and the stitching to muscle tissue. Ouch!!!</span></td></tr>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny was never able to urinate on his own yesterday so they had to put in another catheter last night. The residents always round super early in the mornings and then they come back with their lead doctor later. The resident said there are two options...1. Catheter comes out this morning and he successfully urinates on his own. 2. Catheter comes out this morning but he still isn't able to urinate. In that case, Danny would go home with the catheter, keep it in for a week, and then see a urologist. We are definitely praying for option #1!! </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The resident also mentioned switching to oral pain meds and Danny got pretty upset. He is scared to switch back to oral because so far the pump has been the only thing that has kept the pain under control. However, oral meds stay in the body longer...The transplant team finally found a good combination of long and short acting pain meds after his last major surgery and it would be nice if the general surgery doctor would just listen to what works and go with that. I'm not sure if it's that easy. I'm anxious for the surgeon to make rounds so we know for sure what's happening today.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvHU3EsbARu5W1HMpcO20dytTM4uxoFe5fOw1zrQCWxGgpagWzlUeOKb8nh7ZWFCQrjfbca4uHJnSr56DYukJlg5zGupPl50MQz9rQMDakeq8I5dhhWmS-2FIIDAbYL2FLldlj1OmNSMA/s1600/IMG_3747.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvHU3EsbARu5W1HMpcO20dytTM4uxoFe5fOw1zrQCWxGgpagWzlUeOKb8nh7ZWFCQrjfbca4uHJnSr56DYukJlg5zGupPl50MQz9rQMDakeq8I5dhhWmS-2FIIDAbYL2FLldlj1OmNSMA/s1600/IMG_3747.JPG" height="400" width="300" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">On the LVAD and transplant floors there are many more precautions that are followed than this general surgery floor. For example, on the LVAD and transplant floors, an IV can only stay in a maximum of 2 days before it has to be switched to a new location. This is for infection prevention. Danny's current IV has been in since Tuesday morning and his hand is swelling and is starting to bleed where the needle goes in. He asked the nurse if they were going to move the IV and she seemed very surprised he would request that. It's clearly getting worse though and at some point I think the current vein would blow out. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2iRpAiar8mmsfsSFjZ9RO0ad5YXxcebuZlLLUS1NawDI0UPSZ2DysPww-x6MKfubgxm3Fmx53dMchtunE0LVNHqAsuBD5iVsSK0MgHdnlNR2lxVzxVbb0ZTvVdlqxztCwIsXjIIZBDY8/s1600/IMG_3742.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2iRpAiar8mmsfsSFjZ9RO0ad5YXxcebuZlLLUS1NawDI0UPSZ2DysPww-x6MKfubgxm3Fmx53dMchtunE0LVNHqAsuBD5iVsSK0MgHdnlNR2lxVzxVbb0ZTvVdlqxztCwIsXjIIZBDY8/s1600/IMG_3742.JPG" height="400" width="300" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx1HsdsZPsj1TJNIliIDkS_zD5u5mc8ojdlDJXZWmihBfUysTLcBXb63OVHHGHQBTZ6zcxMdDJoxN83EIXiPlmPs3gvzObofWZEmuPPGcGru8agyrSHzFXWaT9c_Av1xftmVCDoAV5qZU/s1600/IMG_3748.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx1HsdsZPsj1TJNIliIDkS_zD5u5mc8ojdlDJXZWmihBfUysTLcBXb63OVHHGHQBTZ6zcxMdDJoxN83EIXiPlmPs3gvzObofWZEmuPPGcGru8agyrSHzFXWaT9c_Av1xftmVCDoAV5qZU/s1600/IMG_3748.JPG" height="480" width="640" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">~T</span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com0tag:blogger.com,1999:blog-1121395890353404410.post-15770592224237627212015-01-21T13:01:00.003-08:002015-01-21T13:01:36.664-08:00This was unexpected<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny's first words of the day: </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhis3k-V38DOvZb_ockH5NLWJQQR9rBfbINmwRRd0ed6bWLOEqIl6YXPChz3Z1bVmlE3vGVqYl6YNXG5u-fa7qoDTSAnVuTBJi0u989nEgbeNh-1BPxHGduSOyi4iQbVOvFG-Y8EPrVEZU/s1600/IMG_3735.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhis3k-V38DOvZb_ockH5NLWJQQR9rBfbINmwRRd0ed6bWLOEqIl6YXPChz3Z1bVmlE3vGVqYl6YNXG5u-fa7qoDTSAnVuTBJi0u989nEgbeNh-1BPxHGduSOyi4iQbVOvFG-Y8EPrVEZU/s1600/IMG_3735.JPG" height="640" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">"This (amount of pain) was unexpected...I wasn't prepared."</span></td></tr>
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<span style="font-size: large;">I had to laugh because there is not one thing about sewing a patch to a lot of my abdominal muscles that sounds easy to deal with! Danny has been known, on many occasions, to explain to the kids and I that our pain can be controlled/managed by putting it out of our mind. So today I took advantage of his "painful situation" to ask him to agree to never tell us that again and he agreed. I hope he remembers our deal when he's feeling good again!! </span><div>
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<span style="font-size: large;">Because the medicines so far haven't been able to manage his pain, Danny was put on a PCA pump...that's the pain pump that gives him medicine through an IV when he presses the button. With the pump comes a sensor that monitors CO2 to make sure the patient is still breathing I guess. Anyway, here's a little video of Danny sleeping...LOL</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjsKiGH4-syH8B9CMbAOzcaUeALd4_OBd6SgQkyiWPVJdBTUsGoE1aDNwPLhVZiPBZfqPMPCfT5KxC-mr67yW7pdeQEfrO2zZHrGIzJL4E_YvxubbzzroFHqW_ZRmfzxKNx7x221E4F0o/s1600/IMG_3736.MOV" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjsKiGH4-syH8B9CMbAOzcaUeALd4_OBd6SgQkyiWPVJdBTUsGoE1aDNwPLhVZiPBZfqPMPCfT5KxC-mr67yW7pdeQEfrO2zZHrGIzJL4E_YvxubbzzroFHqW_ZRmfzxKNx7x221E4F0o/s1600/IMG_3736.MOV" height="360" width="640" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny is in a semi-private room because that's what is automatically done for the general surgery patients, I guess. As an LVAD and transplant patient, Danny has always had a private room for germ control since he's immuno-suppressed. The other guy's family was here a long time last night coughing, using the (shared) bathroom a lot and even pushing that guy's tray, WITH HIS URINAL on it into Danny's half of the room. A part of the door curtain had been left open by the nurse when she ran in to help the guy get up. He was walking around the room in his underwear and fell. I asked the nurse (in a quiet voice so as to not possibly offend the other patient or his family) if it was normal protocol to have an immuno-suppressed, transplant patient to share a room with another patient. She said "well this is a semi-private room so it is what it is." Because we still didn't feel quite certain that the circumstances were what is best for Danny's care, I emailed his transplant nurse who personally follows his care closely. Then the other patient's friends came to visit, who all used the patient bathroom and to make things more exciting, they had a long, loud conversation comparing their DWI's. No, I'm not joking. Finally they left and Danny and I tried to get some sleep...nope! His pain was so bad that he couldn't sleep. Also, he hadn't gone to the bathroom since 9:00 am yesterday morning and after hours of trying to use the urinal, the nurse catheterized him. Never a fun thing! </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">This morning was when it got crazy. The other guy's doctor came in and went into his curtain/door. They were talking about the guy's staph infection on his leg and that he will have to go home on antibiotics and a wound vac because it's still draining. Yep, that's right my husband with a suppressed immune system is sharing a room with a dude with a staph infection. I realize that his infection won't jump off his leg and fly through the air onto Danny's body....but that's not the point. It's still a risk. The kids and I wear masks around Danny if we are sick because we know he's very susceptible to getting sick. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">After Danny and I talk some, and we get input from our parents, we decided that I would walk over to the cardiac area and talk to Danny's transplant nurse. She said that everything is probably ok with infection, but they always prefer their patients to be in private rooms because the risk is too great. She said she would talk to the cardiac doctors and asked us to talk to the charge nurse. When I got back to the room, Danny called and asked to speak to the charge nurse. I explained our concerns about sick family members visiting and sharing a bathroom/room with someone who has a staph infection. She said she understood our concerns and wanted to know if I wanted a bedside commode or if I'm requesting a private room. I felt very uncomfortable and almost like a snob for wanting a private room. However, I mustered up the courage and said yes, I would prefer that Danny have a private room. She said that private rooms are very scarce but she would see what she can do. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Hours later we hadn't heard anything from the charge nurse. A patient care advocate happened to come in on a routine visit to tell us about his patient rights and how to contact them if we have a complaint or problem. Danny asked me to tell the advocate about the whole situation and we went out into the hall to talk. That wasn't fun because the nurses can see me obviously complaining to the guy. Not long after, the transplant doctor on call came to visit Danny and was so upset about the whole thing. She said that it's stupid to put a transplant patient in a hospital room with another patient with who knows what diseases. She also asked us to contact the patient advocacy people because apparently transplant patients getting private rooms on the general surgery floor is an ongoing battle. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The guy next curtain was discharged and his half of the room and the bathroom were both cleaned. The charge nurse who is here now is trying to find a private room...but they are scarce. So at this point, I think we have done all we can do. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The good news is that Danny's pain is finally controlled with the PCA pump. The bad news is that he can't go home with the pump and will have to be weaned off to oral pain meds. That process historically has taken Danny a couple of days so we will be here longer than expected. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">He has until 6:00 pm to go to the bathroom on his own or the nurse has to put in another catheter. I forgot to mention this part earlier, the catheter was pulled out this morning to give him the day to "try to make something happen, " according to the doctor. Danny has been trying to pee all day with no success so far. It's 3:00 now, so he has 3 more hours to get that urinary system going! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">~T</span></div>
Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com0tag:blogger.com,1999:blog-1121395890353404410.post-50007518362580682872015-01-21T00:11:00.001-08:002015-01-21T00:11:21.595-08:00CatheterThe last time Danny urinated was right before he was admitted yesterday morning at 9:00. He has been trying to pee for the last couple of hours with no success. The nurse just put a catheter in and he's relieved that now he only has "one thing to worry about". He's asked several times why his belly hurts so badly and I've explained the process of sewing a mesh patch to the muscle tissue...sounds painful to me!! His nurse just told us that surgeries in the belly area always seem to be the most painful for patients. She said that in terms of fractured or broken bones, ankles are the most painful. <div>
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He's finally sleeping so I'll try to sleep too. The couch beds are much more comfy on the LVAD and transplant floors!! General surgery is for the birds....</div>
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~T</div>
Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com0tag:blogger.com,1999:blog-1121395890353404410.post-78879331315231107902015-01-20T19:47:00.001-08:002015-01-20T19:47:35.729-08:00Hernia Repair Surgery is Over!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEia9yvqurffe8d7MVw2ih7L31xdLeYAtr-VdJmopIF-RXc3aks564npgl8tobtGbgty4gqIaemvpw2ONIYdeT2eI73jxd0PPB92-7YpbDAnmeeCPKIj_O2WJgL3WL2zAtpDopn54gvPPUk/s1600/IMG_3728%5B2%5D.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEia9yvqurffe8d7MVw2ih7L31xdLeYAtr-VdJmopIF-RXc3aks564npgl8tobtGbgty4gqIaemvpw2ONIYdeT2eI73jxd0PPB92-7YpbDAnmeeCPKIj_O2WJgL3WL2zAtpDopn54gvPPUk/s1600/IMG_3728%5B2%5D.JPG" height="320" width="240" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The hernia repair surgery went well. Danny was in recovery for a couple of hours and is now in a room. Unlike all the other times he has stayed in this hospital, this is a semi-private room. The other patient and his family are loud and have been comparing DWI stories. The patient is walking around in his underwear and they keep pushing his tray with his urinal on it into Danny's half of the room. Each patient has a curtain to act as a door and I can tell you it's not much of a door!!!! They are coughing a lot and the germs are freaking me out and I'm not a germaphobe by any means...we have been trained to be careful around sick people with Danny since transplant. I'm just not sure how this room is beneficial to his health!</span><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhdnTokPiNerYQnnSt8BPmyuznz9Kh4O9Tqh_bzmQpWhKaotwZyeJAWl0h-5P_aVSoVzHj6KfkchH2mtDbOTRg6UNtBgYAuQet6cIogIBRU5yC8rUjjoINC-sGTm54BZDxCEeIMz8CRj8/s1600/IMG_3727%5B2%5D.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhdnTokPiNerYQnnSt8BPmyuznz9Kh4O9Tqh_bzmQpWhKaotwZyeJAWl0h-5P_aVSoVzHj6KfkchH2mtDbOTRg6UNtBgYAuQet6cIogIBRU5yC8rUjjoINC-sGTm54BZDxCEeIMz8CRj8/s1600/IMG_3727%5B2%5D.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">The left tray is the other patient's...urinal and all. Gross!</span></td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-2oTWHbccmp15DcHxw89xyp6uh7aUd6sTod0VGymQrBcR2ltn_twxqb6aPBLoh-8L0mB5nNeXgUchLgon1psrjGsBc4Z2Z-FuIvABs4pPcDGZdGAhnM24vgzfUcKiSyhlJ3AByj2qkOE/s1600/IMG_3726%5B2%5D.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-2oTWHbccmp15DcHxw89xyp6uh7aUd6sTod0VGymQrBcR2ltn_twxqb6aPBLoh-8L0mB5nNeXgUchLgon1psrjGsBc4Z2Z-FuIvABs4pPcDGZdGAhnM24vgzfUcKiSyhlJ3AByj2qkOE/s1600/IMG_3726%5B2%5D.JPG" height="320" width="320" /></a><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">On another note, Danny's pain has been at a 10 since surgery and it seems like the most recent pain medicine has helped some because he is finally sleeping. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">This is his description of the pain: </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">~~It's like someone is sawing through his body starting at the layer right under his skin. The sawing never gets to the point where the cut goes all the way through though. Instead, it remains at the point where the saw teeth are trying to grind through the abdominal muscles. Anytime he moves his torso at all, the pain shoots up from a 10 to a 50. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfcm01251UzhxAnqoeAqzIDKJ9cDWiM7iQwo384dx7ks6pDvmPFvcfiIoiOOSJTwK9iS3UWc6zOuZnfx_MHuV_5sjTDhYmLOg1mK28nnd41nnZlKdvA5SStGplDeFdEI9zg_iqcKMv79s/s1600/IMG_3725%5B4%5D.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfcm01251UzhxAnqoeAqzIDKJ9cDWiM7iQwo384dx7ks6pDvmPFvcfiIoiOOSJTwK9iS3UWc6zOuZnfx_MHuV_5sjTDhYmLOg1mK28nnd41nnZlKdvA5SStGplDeFdEI9zg_iqcKMv79s/s1600/IMG_3725%5B4%5D.JPG" height="320" width="320" /></a></div>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The surgeon said he put the mesh up over the bottom of Danny's ribs to make it harder for the hernia to come back out of the top. The mesh is sewed (tacked) down along the sides and bottom and the top left and right corners. I think I said before that the problem is that he couldn't tack the mesh down properly along the top of the hernia because he can't sew into rib bone! There's a 20-40% change of the hernia coming back but even if it does, it could be so minor that it wouldn't require repair. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">That leads me to the specific prayer requests:</span><br />
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<ul>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Pain under control quickly</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Quick healing and recovery</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Discharge tomorrow</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Hernia never returns</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Peace and strengthened faith for Maggie and Charlie</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Finances</span></li>
</ul>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Thank you for reading and praying for us!!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">~Tricia </span></div>
Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com0tag:blogger.com,1999:blog-1121395890353404410.post-51188974254086248662015-01-19T20:15:00.001-08:002015-01-19T20:15:44.751-08:00Incisional hernia surgery<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Yes I know, it's been a looooong time since I've updated the blog and I'm sorry. If there had been something new to report I would have! Our family has had a rocky road since transplant for sure, but Danny still has no serious sign of rejection, so it feels ungrateful to even bring up the troubles. On the other hand, I know there are people who care and want to know how to pray...so here goes! There are two significant complications that Danny has had so far. The first is an incisional hernia, which he developed after transplant. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbj8ugxG-B52IjKZEbSgkf7WR8L8QfzHhKLeqVQ_LRN6qwWiKSxjlOcSujUQQ_n84Q2wte0IJfD6HmuvMv87UAiFykwWWSv2_XIqKDdukxa9_NUotrst0RC1sBDkyYNBiLAMk-GwkUHyY/s1600/025.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjRVofp0HeNNrp0CqdalWn0tEicmNrqvsiRXZqVMY2PTglV_Y8glrLmqesFK-u3TuIf5_SlTE9Apw0IiEF-mLpUqRWJa-AGBsn9nYU3z7ER4HwdUs66uvYwRJ843uvT0TTGWI1UNjHJ5Y/s1600/026.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjRVofp0HeNNrp0CqdalWn0tEicmNrqvsiRXZqVMY2PTglV_Y8glrLmqesFK-u3TuIf5_SlTE9Apw0IiEF-mLpUqRWJa-AGBsn9nYU3z7ER4HwdUs66uvYwRJ843uvT0TTGWI1UNjHJ5Y/s1600/026.JPG" height="400" width="300" /></a><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbj8ugxG-B52IjKZEbSgkf7WR8L8QfzHhKLeqVQ_LRN6qwWiKSxjlOcSujUQQ_n84Q2wte0IJfD6HmuvMv87UAiFykwWWSv2_XIqKDdukxa9_NUotrst0RC1sBDkyYNBiLAMk-GwkUHyY/s1600/025.JPG" height="400" width="300" /></div>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">It started as just a few small ones, but now appears to be one huge hernia! It's very painful and Danny is quite relieved that the transplant team cleared him for surgery finally. He wanted to have it repaired around Thanksgiving, but the team wouldn't clear him until after his year from transplant anniversary testing and results came back okay. The hernia repair surgery is tomorrow (2/20/15) at 11:00 at our home away from home hospital in New Orleans. That leads me to complication #2. Danny's body does not like (tries to reject) one of the anti-rejection meds he will take for the rest of his life. The doctors have already switched the med to the other option to see if his body accepted it better, but the side-effects didn't change much. The medicine causes extreme, uncontrollable diarrhea. When Danny is working out of the New Orleans office, there are many days (routine actually) when he has to stop at every exit between Baton Rouge and New Orleans to go to the bathroom. Some nights he cannot even make it from our bed to the bathroom. That's a really hard thing...it's physically painful but also emotionally painful I'm sure. Danny has convinced himself that the diarrhea is caused by the hernia and therefore will go away after the surgery tomorrow, but I really don't think that's the case. The doctors and nurses have all told him it's the medicine and his lab work verifies that. However, I'm sure most of us use denial or the "head in the sand" tactic to cope with hard things from time to time. A few days ago I asked Danny what he was going to do if he is wrong and the repair surgery doesn't solve the diarrhea issue and he said that he will just deal with that if and when it's the case. I just don't want him to live the rest of his life being sad about the complications when he could be celebrating his new heart. It's a hard balance to be the supporter and encourage him when he's feeling down while also reminding him that there is joy to be found in all this. There are blessings. The same lesson is for me. People often ask how Danny is doing and it's such a hard question! The answer I assume most people want to hear is that he is doing and feeling great. And if all that's being considered is how his new heart is doing, then it's a truthful answer. However, it's super hard to ignore the negative side-effects he's had. Are we ungrateful? Are we taking this precious gift of a healthy heart and being unappreciative? That's how I feel when I give an honest answer about how Danny is doing. That's why blogging has become hard...I feel like such a complaining jerk. We've been so blessed and we need to focus on that instead of the complications. It's hard! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny has new insurance through his work and it's "comparable" to the previous policy...comparable for healthy people! Though he technically doesn't have a deductible as long as he uses in-network physicians and hospitals, he now has huge co-pays for outpatient hospital procedures and radiology stuff like x-rays and CT scans. Danny has radiology testing on a very routine basis and outpatient procedures fairly often also. These co pays are large enough and impact the budget enough that I'm going to begin looking for a second job. If my excess weight came off in direct proportion to the amount of hours I work, I wouldn't be overweight at all!! LOL...wish it were that easy. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">So to do a quick recap of prayer requests...</span><br />
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<ul>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Hernia surgery successful and without complications</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Diarrhea gone!!!</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Money/Tricia 2nd job</span></li>
</ul>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Thank you for praying for us! I'll update tomorrow with surgery updates!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">~Tricia</span></div>
Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com0tag:blogger.com,1999:blog-1121395890353404410.post-31274104730714169132014-09-08T20:56:00.003-07:002014-09-08T20:56:42.505-07:00Upset Stomach Still<span style="font-size: large;">Danny was discharged this past Friday after the GI and Infectious disease docs felt comfortable that they had ruled out or at least submitted the blood work for bacterial infections. They feel like it must be a virus that will need to run its course. The heart transplant team now believes Danny's body is rejecting one of the anti-rejection medicines. He has had some stomach problems each time they've increased the dose of this particular medicine, but nothing like what he has been experiencing the past few weeks. The onset of the severe diarrhea began about the same time he was completely weaned off of pain medicines. We didn't realize that connection until this past hospital stay. Apparently narcotic pain medicines have a natural side-effect of causing constipation, which counteracted the diarrhea. Crazy!!</span><br />
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<span style="font-size: large;">The plan is to taper off of the Cellcept for a little while and then give him a huge dose when the doctors (more likely the clinical pharmacist) say it's time. They explained it to Danny like shocking a swimming pool with chlorine. They will try to shock his body into submission. I don't know what the plan would be if his body continues to reject (by getting rid of) the important. As far as I know, there isn't an alternative to this particular medicine. </span><br />
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<span style="font-size: large;">It's Tuesday night, and I don't see an improvement in his diarrhea yet. He appears weak and tired to me. I don't see how he isn't completely dehydrated. At one point he was told to take Metamucil, but he needs to call the nurse to find out how much to take. </span><br />
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<span style="font-size: large;">It's hard to watch him feel so yucky. He had blood work done today and I don't know the results yet other than he can go down a little bit more on the Prednisone. That's great because they want him completely off the Prednisone before doing the hernia surgery, which will hopefully be in December. </span><br />
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<span style="font-size: large;"><br /></span>Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com1tag:blogger.com,1999:blog-1121395890353404410.post-51631021141880062492014-09-04T19:14:00.002-07:002014-09-04T19:14:19.766-07:00Not in Rejection<span style="font-size: large;">Great News....Danny's biopsy showed no rejection at all! The surgeon had trouble getting to the right spot during the biopsy and couldn't figure out why, so she ordered an x-ray. She discovered that his hernias (yes, plural) are pushing on his heart and moving it up some so she had to readjust her aim in the biopsy. Hernias pushing on his heart might explain the shortness of breath he has been having lately!! I don't know of a change in plans for dealing with the hernias...wait until closer to Christmas to do surgery so I'm out of work and hopefully Danny will be weaned off of Prednisone by then. Which leads me to the potential problem...the doctors (transplant team, GI team, Infectious Disease team) think that Danny either has a stomach virus or is having a bad reaction to the CellCept (lifetime immunosuppressant medicine). They believe they've ruled out a bacterial infection because nothing has showed up positive in the bloodwork so far. It could be a virus because he is so susceptible to catching anything. He could of caught a virus that I caught from one of my students and I didn't even feel a symptom. With a suppressed immune system, the smallest bug that he would normally never get sick from can make him extremely sick. Right now the GI doctors feel like its a virus and the transplant team think it's the medicine. The plan (as far as I know) is to treat it like its a medicine complication and switch some things around. I'm not sure what they will do since Cellcept is a necessary thing and increasing the doses of the lifetime anti-rejection meds coincides with decreasing the Prednisone (short term anti-rejection med). He definitely needs to continue weaning off of that so he can have his hernia surgery!! </span><br />
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<span style="font-size: large;">He was a little hopeful that he would be discharged today because the clinical pharmacist gave him a new blue card (table of meds/doses/times, etc...) to go home with. Sadly Danny isn't allowed to take any kind of medicine that would help diarrhea except for Metamucil (I know, that's for constipation...but apparently it works by bulking up the stool so in theory it should help). Meds like Pepto Bismol negatively interact with his transplant meds. </span></div>
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<span style="font-size: large;">Hopefully he will be able to come home tomorrow. Today is Maggie's 15th birthday! Last year Danny was in the hospital too, I think he had just gotten his LVAD. We had a birthday party for her in the hospital. Charlie's birthday is in December and we celebrated his in the hospital last year too! Looks like we'll do it again for Charlie since the hernia surgery is in December!!! Good thing my kids haven't ever gotten accustomed to big birthday parties with a bunch of friends!! </span></div>
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<span style="font-size: large;">I'm excited for Danny to get back home. I went to see him last night and it was like being back in our second home! We know the nurses and staff and it feels very comfortable there. I haven't decided if that's a good thing or not! Being apart from each other isn't easy. </span></div>
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<span style="font-size: large;">Thanks for praying! No rejection is definitely praise worthy!!!! </span></div>
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<span style="font-size: large;">~Tricia</span></div>
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Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com0tag:blogger.com,1999:blog-1121395890353404410.post-73216110132026309952014-09-02T20:20:00.001-07:002014-09-02T20:20:24.212-07:007 months since surgery<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Its been a little over 6 months since the transplant and things are not what I expected at all. I know that sounds negative and I don't mean to be...I'm just trying to be transparent and honest with our experience. Danny and I both thought he would be feeling a lot better than he is and struggle with discouragement. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">When he was diagnosed with end stage heart failure and was hospitalized, Danny was extremely ill and felt a huge difference when the LVAD was put in. He felt like he could breathe again and noticed a big difference in his energy levels. However, that's not saying much because they put the LVAD in when it was either that or die. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Life with an LVAD isn't exactly ideal. Emotionally it was very difficult, not to mention the hassle of plugging in and battery changes. We assumed that life after transplant would be far easier. We were told many times it would be difficult in that it's a life-changing event with many challenges. But you truly don't understand what that means until you walk through it! Don't misunderstand, Danny and I are both grateful for the transplant and are thankful for every day he has...just a little discouraged at the bumps he has had thus far in the recovery process. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">He has 3-4 incisional hernias. His incision goes from his sternum to the right of his belly button and the hernias are grouped together about 1-2 inches above his belly button. They are big and extremely painful. It looks like he has an alien growing and bulging out under his skin. Each time he is back in New Orleans they discuss the hernias and the hope is to wait until he is a year out from surgery to do the hernia repair. Waiting that long is to give his body more time to heal from the first three surgeries, and also time to finish weaning off of Prednisone. Prednisone is used as a short term anti-rejection medicine and he started on an extremely high dose and is now down to 4 mg/day. He also takes lifetime anti-rejection meds that are increased as the Prednisone is decreased. Coming off of Prednisone is wonderful because the side-effects of that are major puffiness and mood swings, but he is having a LOT of GI trouble with the increase of the longterm meds. This last week Danny has had severe diarrhea, which we attributed to the medicines. However, after some blood work came back the doctors said it showed some pretty disturbing signs of rejection and infection. So, next week they are going to do another biopsy to double check the possibility of rejection. They also said that if he has any more diarrhea he is to go to the ER (Ochsner) in Baton Rouge and they will be able to work with the team in New Orleans (hopefully). </span></div>
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<div>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">That was yesterday...today he is just having bad nausea. He has a temp of 99F and we are to call at 100F (how do you make a degrees symbol on a keyboard??). I'm also supposed to watch him like a hawk and if I see anything that scares me I'm to take him to the ER. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">---------------------------------------------------------------------------------</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny's latest appointment in New Orleans was this past Tuesday and this is the first time the doctors and nurses seemed as concerned as we have been about the hernias, so clearly they are getting worse. The plan is to do surgery in December, close to Christmas break for me. That way I miss as little work as possible and Danny has as much time as possible to be weaned off of Prednisone. I forgot to mention above that another side-effect of Prednisone is that it decreases the body's ability to heal...so that's not a good combo with surgery and being on such high doses before probably aided in the incisional hernias in the first place. </span></div>
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<div>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">We are not looking forward to another invasive surgery, but on the other hand, these hernias are pretty disturbing. When you run your finger down his incision you can feel the rope-like scar until you get to the hernias. There it feels like a crater from the wound opening back up, and then it goes back to the rope. It's so weird looking but sometimes we have a good laugh! </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Four weeks ago Danny went back to work. I'm not sure if he realizes it but he was so scared to return for fear of failure. It has been tiring, but manageable. He has had a couple of days that were bad and he worked from home, but usually he goes to the office. His work continues to be the most amazing employer possible. I've never seen or heard of a more supportive and genuinely caring work place. Danny is a software developer and was worried that he wouldn't be able to perform up to par because of how he sometimes still feels like he has a "mushy" brain, but it's been fine. It has been good for Danny to be out of the house most days and to get back to work. I'm sure what he does now is not quite the same as his performance prior to transplant, but really most things in his life have changed in the last year or so. He's done fine though, he has solved some programming problems, met with a client or two, and has felt like a contributing member of his job again! </span></div>
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<div>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Once we are past the surgical complications (hernia repair in December), hopefully he will start to feel great again. I doubt he can even really remember what feeling great feels like. This has definitely been a long year! </span></div>
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<div>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">On a different note, I just finished my 3rd week of school. I have a great class and an incredible new principal! Maggie donated her turtles to my class and last Monday I got to work and thought I had killed them. The smell was horrid and all I saw was thick greenish water and lumps of mushy stuff along the wall of the tank. I thought I had killed them, but while dumping the tank out, we found them still alive! It was a really traumatic experience and one I definitely don't want to repeat! Currently the turtles are living in the kid's bathroom because I broke the tank accidentally. I'm pretty excited to get another tank and bring the turtles back to school. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I've been writing this post for a couple of days off and on so there are a few updates since I began. I have a new tank for the turtles in my classroom (thanks Dad!!) and they are super happy!</span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny was admitted to the hospital in New Orleans today. His initial bloodwork today didn't look great and they did a traditional biopsy (through his neck to the heart) so compare results with the bloodwork biopsy. He definitely has some infection going on with the constant diarrhea for a week and is also bound to be dehydrated. They will get the results of the biopsy and all bloodwork tomorrow, so we will know more of the plan then. Danny wants me to stay in Baton Rouge so I can work and be with kids at night. He said that after he talks to doctors tomorrow and knows the issues and the plan, he will re-evaluate what he wants me to do. It's really hard having him in New Orleans with some potentially serious complications/problems happening and not be there with him. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Tonight Maggie told me that as hard as last school year was for her with me not being home so much, she wanted me to be with Daddy if it helped him feel better and that she would be okay. How awesome is it that she is so selfless! </span><br />
<br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I'm definitely anxious to hear from him tomorrow. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">On the home front...Charlie was fouled pretty badly (and intentionally) in his last game. The player tripped him, kicked him in the achilles tendon, and then stepped on the side of his ankle after he was on the ground. Thankfully his ankle isn't broken, but it is a really bad sprain and the doctor said his tendon looked bad and he's lucky it wasn't broken. Charlie has to wear this tight, lace-up boot support ankle thing and he hates it because it hurts so badly! It hurts badly without the ankle support too. He can't play soccer for at least a week and a half according to the doctor. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Maggie has an outer ear infection, and thankfully mom was here this past weekend and was able to diagnosis here and I had the antibiotic ear drops on hand Maggie needs. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I'll blog again after I have news tomorrow!</span></div>
Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com0tag:blogger.com,1999:blog-1121395890353404410.post-83479139708654007842014-06-19T19:58:00.000-07:002014-06-19T20:01:36.243-07:006 months<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">It’s been a long time since
I’ve blogged and I know some of you have been wondering how things are going.
Sorry! The school year ended on May 22 and I’m already ready to get back in my
classroom to start getting ready for next year…I do love teaching. It’s not
what I thought it would be. I expected more teaching of curriculum and less
teaching of behavior, manners, feelings, attitudes. As parents, Danny and I
took care of those responsibilities and didn’t leave them to the teacher but
I’ve come to realize that just isn’t always the case. After I took the time to
step back from the shock and disbelief of the way some people raise their
children, I realized that God has given me the job of teaching in the public
school at this exact moment in my life for a purpose…His purpose. My kids are
both teenagers and are quickly approaching adulthood and I really think they
are great kids! They are far from perfect, but who isn’t?!?! When I think of
Maggie and Charlie growing up and moving away from home I honestly have to stop
thinking about it so I don’t start crying. Is it really possible to miss them
already at 12 and almost 15? <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">OK break~~I’m sitting at the
place where Maggie takes Hapkido (a martial art that she absolutely loves). The
“studio” is a building that sits on the family’s property. They have lots of
chickens and 4 or 5 roosters. I”ve logged quite a few hours now watching these
roosters and they are pretty fascinating. There is a lot of great info I could
give about what I’ve learned so far, but that’s another blog I guess…but I’m
blown away right now. A rooster is in the tree on a branch like a huge bird! If
the rooster can get in the tree then what prevents the thing from flying away?
I’ve been trying to figure out what keeps all these animals from walking out of
the yard…which I thought was a mystery enough!! These roosters are awesome.
They even have their own individual struts, and boy do they strut!!!<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Back to blog~~~I don’t know
if already missing my kids is normal or not, but it is the way I feel. However,
I’ve come to realize that my “parenting” days are far from over. In fact, they
are really just beginning. My students need so much more than to learn the
typical school subjects. They need to learn about caring, sharing, giving,
kindness, helpfulness, (sometimes) personal hygiene, (sometimes) hair care,
table manners, respect for each other and for authority, how to be a friend,
etc… I’m not only a teacher but a social worker, health instructor, and “mommy”
to a whole group of kids each year. What I’ve realized is that even though that
is not at all what I thought being a teacher would be like, it’s exactly why
God has me being a fairly new certified teacher at age 39. In the beginning I
felt so inferior to the younger teachers who have masters degrees and more
years of “actual teaching experience” than I do. But that is so wrong. What I
have is many years of adulthood and life experience. I’m more than halfway done
raising my own kids while they are starting their families. I have countless
hours of home schooling my own kids in their early years and countless more
substituting and volunteering in the public school classrooms. So, though I’m
technically less qualified by college degree and years of service, I am very
qualified to teach and am so excited about the plans the Lord has for me. It’s
so easy to look at other people and feel inferior or insignificant…if you were
to meet my siblings (real and in-laws), you would understand how I could feel
inferior because they are all so incredibly gifted and amazing!! God has made
me to be a teacher and I think I’m a better public school teacher now than I
would have been had I started teaching at 20 something. I’m so excited to start
the new school year fully mentally prepared to be all those things the students
need other than the regular classroom teacher and I pray that the Lord will be
able to effectively use me to make a difference in the lives of those children.
<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny is getting better…it
seems like the longest process in the world, but each time we go back to New
Orleans the doctors and nurses are easily able to see and encourage us with his
progress. He has a couple of incisional hernias along the bottom of his sternal
incision that cause a lot of pain. There isn’t a plan to try to repair the
hernias because they don’t want to cut him open again. Do hernias just go away
by themselves??? Many days his arms and/or legs still hurt. It’s pretty cool
actually (cool may not be the most accurate adjective I could use)! When he has
the leg or arm pain it’s because his vein (or blood vessel—I don’t know!) feels
rock hard from a blood clot. Sometimes the clots are short (an inch or so) and
sometimes they go the length of his forearm. These clots are in superficial
veins we have been told so they aren’t anything to worry about. I don’t know if
the clots will happen forever or if they are more short term. Danny is still
having tough side-effects from some of the medicines and I honestly don’t know
if the hard blood clots are one of them. As you will remember, Danny has a ton
(actually fills up a medicine cup) of medicines that he takes. Some are
short-term and others are long-term and forever. The short-term ones
(Prednisone is a big culprit in this) cause the worst side-effects (I hope I
remember that correctly and I didn’t just make that up to help us cope). The
good news is that next week is his 6-month (post-transplant) visit in New
Orleans. The 6-month mark is when they can remove some medicines and wean off
others. Danny is still completely rejection-free, which I contribute to prayer!
My hope is that Danny will start to feel a lot better when some of these meds
are gone. Here’s a list of his common side-effects: shakiness, dizziness,
involuntary muscle jerks, weakness, mood swings (severe), nausea, insomnia, arm/leg
pain (severe), finger cramping. I’m sure there are more but those are the ones
that never seem to go away. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny started physical
therapy (cardiac rehab) about a month or so ago and he enjoys that. It’s
amazing how out of shape he became (I don’t mean his physical appearance but
rather his muscle function) from being so sick for so long. They are very
careful with him at therapy and monitor him closely. It’s hard to remember my
youthful, soccer playing, energetic husband a couple of years ago and see him
struggle to ride a stationary bike for 4 minutes. The balance between feeling
so unbelievably grateful and blessed that he is alive with a new, young, and
healthy heart and feeling so scared that he won’t ever be able to play hard
outside again with our kids feels like a nightmare to me sometimes. In fact, you
can’t really even express those feelings without also feeling like an
ungrateful jerk. As I sit here crying in this car with the flying rooster
nearby (still in that tree), I am reminded that “…God gave us a spirit not of a
fear but of power and love and self-control” (2 Timothy 1:7). <o:p></o:p></span></div>
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<div class="MsoNormal" style="margin-left: .5in;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Lord
please strengthen me and my faith in you. I can live and function in my own
self-control, but I don’t want to. I want to be dependent upon you for my
thoughts, feelings, fears, and actions. Help me to trust that no matter what
life holds for us in the future that it is in your hands and therefore it is
good. You are good…no matter how I feel. You are good, no matter how Danny
feels. You are worthy of my complete trust in you with my feelings and life. <span style="mso-spacerun: yes;"> </span>Please help Danny get stronger and feel
better. Please help him to get back to living again with his new heart. Thank
you for the support system we have. So many probably don’t even know what a
blessing they are to us, but they are and thank you for helping us through
people. Sometimes (often) I need help and please continue to give me the
humility I need to ask. I can’t do all of the things Danny used to do and I
need help. Danny struggles so much with feeling unworthy and helpless…encourage
him and let him know how loved he is. Please help Charlie learn how to do the
things Danny can’t right now…give him strength and a desire to fill the gap as
long as we need him to. Mostly Lord please continue to heal Danny and give us
some “normalcy”. More than that though, help me to trust you and be content,
thankful, and joyful for where we are today.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Two weeks ago Danny told me
that we are going back to the church we left years ago and I am so overjoyed. I
have prayed for a long time that the Lord would lead us back and honestly was
starting to give up hope. We were at a wonderful church with wonderful people,
but for me it just wasn’t “home” and it’s good to be back!!! Danny hasn’t been
able to go yet. Large crowds aren’t good for him and he gets really tired
quickly. It’s awesome how there’s one, huge Body of Christ spread all over the
world, and then there are individual Bodies of Christ. Though we are all
Christians and serve the same God, we are most at home in our own Body (church
and church family). <o:p></o:p></span><br />
<br /></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I’ll update the blog again
next week after Danny’s at Ochsner again. Not sure the day though!! <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com0tag:blogger.com,1999:blog-1121395890353404410.post-54463987470555090322014-04-28T21:20:00.003-07:002014-04-28T21:20:55.305-07:00Getting used to medicines<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">It's been a long time again since I've blogged. I appreciate the people who ask about Danny from time to time because it reminds me that people are thinking, caring, and praying for us. I get so wrapped up in keeping things together that I forget about others I guess. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I am so grateful and thankful to say that Danny still has not had ANY rejection. I have to keep reminding myself of that and be intentional about thanking the Lord because the medicinal side-effects are so difficult for Danny...and therefore me too.</span><br />
<br />
<ul>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">intense burning all over his body from the inside</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">intense fire-ant bite like feelings all over</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Intense itching everywhere</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">horrible vision, causing headaches and dizziness</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">confusion/concentration problems</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">mood swings, severe</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">surgical pain, controlled with pain meds...best is a 6/10 on pain scale (10 being worst pain possible)</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">cramping</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">weakness</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">shakes</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">excessive sweating during sleep</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">sleeplessness</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">exhaustion</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">depression</span></li>
</ul>
<br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">If you add all of those symptoms together, it makes for one hard day...for Danny and those around him who are trying to help him. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The medical bills are just scary. He has had three open heart surgeries so far...</span><br />
<br />
<ul>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">LVAD (mechanical heart pump) implanted</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Heart transplant and LVAD removal</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Repair of transplant surgical complications</span></li>
</ul>
<br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Those three surgeries required months of hospitalization and that adds up quickly! After a transplant the doctors do biopsies routinely to check for rejection. Biopsies aren't fun because it's a tube going in through the carotid artery on the right side of the neck that is fed over and down to the heart. A small chunk of the heart is cut off and removed for the biopsy. They have always taken a few chunks with each biopsy...I guess to make sure they have a good sample. Biopsies aren't anything new, but now there is a blood test that can be done through blood work. It's called Bio Map (I think that's how it's spelled). Anyway, obviously it's great because for Danny it's just more blood that has to be drawn and no matter how someone hates having blood drawn, it's always going to be more pleasant than an actual biopsy. So far Danny has had three Bio Maps done, and each of the results has matched the traditional biopsy results. The plan was to discontinue doing the traditional ones and do only Bio Mapping in the future. Danny and I found out (after 3) that Blue Cross won't cover the Bio Mapping because it's still in an investigational stage. Ochsner sent documentation to Blue Cross to explain why it is medically suggested for Danny and all of the current statistics, but Ochsner stood by their original denial. Each Bio Map is extremely expensive, and unfortunately it's our bill. I think Danny is going to request to have traditional biopsies instead of the Bio Map since insurance won't cover it. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">He will soon be returning to work. I'm not sure how it will go because programming is such a detailed and technical thing, but returning to "normal" will be a good step. His work is so great and I know they will work with his shortcomings until he is weaned off some of the medicines with such terrible side-effects. He is supposed to wear a face mask anywhere away from home for a least a year after transplant, so I'm not sure how that will work. Wearing a face mask throughout the work day doesn't sound like fun to me! </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Prayer requests:</span><br />
<br />
<ul>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">finances</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">medicine side-effects</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">encouragement</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">faith</span></li>
</ul>
<br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Thanks for continuing to pray for us. We still have a long road ahead of us!!</span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">~T</span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com2tag:blogger.com,1999:blog-1121395890353404410.post-84444897017433238532014-04-06T17:45:00.002-07:002014-04-06T17:45:26.628-07:00life and death<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Contemplating life and death is hard. I'm very much a realist, but there are times when I intentionally stick my head in the sand and absolutely refuse to listen to what may or may not be the reality. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">1. I choose to believe that babies go to Heaven. I have heard both sides of the argument and have read what the Bible says about both of those sides. Though I side with the "go to Heaven" believers, I have lived enough to know that first, I don't know everything, and second, I certainly don't know everything about God or Heaven. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Our first son, Daniel Jr., died at 25 hours old from an unexpected heart-defect. I simply cannot live with the thought of him not being in Heaven. So I don't. The Bible says in Revelations 21:4:</span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<br />
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.</i></span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i><br /></i></span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">So, I know that even if I'm proven wrong...it won't matter because somehow I won't mourn or cry or feel pain. </span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Last night one of my dad's dogs (children) got hit by a car. Dad is out of town and the teenager next door to him and I take care of the animals. I don't know how Patches got out and the guilt and grief the teenager and I are feeling is immense. Let's suppose that Patches opened the door himself (which is possible because this dog is like Houdini), it still happened under our our watch while Dad was away. I told Dad (over the phone), which was completely heart-breaking. </span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Patches was a truly amazing dog. He was a German Wire Haired Pointer...which is the kind of dog on the movie <i>Up. </i>He was HUGE...but thought he was the size of my Maltese. Patches would attempt to put his entire body in your lap and would literally wrap his paws around your neck to hug you...when I say you I mean anyone who was in the room!! Danny doesn't like big dogs at all and Patches, through his complete love and affection, bonded with Danny. It was really neat to watch Patches snuggle with Danny but somehow knew to not put any part of his body on the parts of Danny's body that are still so painful from the surgeries. To watch my dad with his dogs is like watching my sister with her son. He loves them and they adore him. The teenage boy, his dad, Maggie and I buried Patches and Maggie picked flowers and made a cross for his grave. </span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">2. Just like with babies, I choose to believe that animals go to Heaven. However, unlike with the babies, I haven't heard anyone ever use evidence from the Bible to back up my claim that animals are in Heaven. But that doesn't matter to me. Head in the sand!!!! Animals love, feel fear, pain, sadness, joy, etc... The Bible says:</span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="p1">
</div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>Then shall the trees of the forest sing for joy before the LORD, for he comes to judge the earth.</i> 1 Chronicles 16:33 </span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="p1" style="text-align: center;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">and</span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><b><br /></b></span></div>
<div class="p1">
</div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>Sing, O heavens, for the LORD has done it; shout, O depths of the earth; break forth into singing, O mountains, O forest, and every tree in it.</i>..Isaiah 44:23</span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">If the trees of the forest can sing for joy before the Lord and the depths of the Earth, mountains, and forests and sing and shout...why can't animals have a soul, be saved, and go to Heaven? Or why can't God bring them to Heaven just because he loves them even if they don't have salvation like people do. Anyway, don't waste your time trying to be the voice of reason in my life to prove to me why I'm wrong because I won't listen. In fact, I won't even listen to you! </span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Here's what I'm choosing to believe...Today, Daniel Jr. and Patches are together and are both quite happy getting to know each other. </span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">My heart is aching from sadness. I've cried a river today! It was completely impossible to not love that dog! </span></div>
<div class="p1">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="p1">
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny has been having severe pain in his right forearm. The slightest touch causes him to moan and jerk his arm away. The big vein on the inside of his forearm is hard like a rock. I called the nurse to inform her and he had an ultrasound done the next day in New Orleans. He has a large blood clot in his right arm pit that is causing problems all the way down to his hand. Apparently the negative effects (or the clot itself) only go a few inches and down to the elbow at most...but once again Danny is unusual and has more complicated problems. They didn't admit him Friday because over the weekend not much would be done other than observations, so he will be at Ochsner more this coming week to do more tests. Not only are they concerned with the large clot they do see, they are worried there are more smaller ones underneath they couldn't see on the initial ultrasound. I don't know what the plan is to deal with the clot yet. I don't know if he will be put back on Coumadin to prevent future clots (He hasn't been on Coumadin since having the LVAD). I don't know what the risk is for part of this clot breaking off and causing a stroke. I do know that the doctor teared up when she got the ultrasound results and told Danny that of all the patients she didn't want this for him. He has had lots of unusual complications they haven't understood!! I also know of an LVAD and subsequent heart transplant patient who had waited years for a heart died 5 months after transplant of a stroke. I do know that stroke is a major risk for transplant patients. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I can't stick my head in the sand when it comes to Danny. I have to face the reality of how severe all of this is. Life and death is in the Lord's hands. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>And he said, “Naked I came from my mother's womb, and naked shall I return. The Lord gave, and the Lord has taken away; blessed be the name of the Lord.</i> Job 1:21</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The doctors told us at the beginning of all of this end stage heart failure stuff that transplant is a last option. It's a good option, but only when all other measures have failed because then the person is so susceptible to other potentially fatal complications. The truth is that Danny's life is in the Lord's hands. As unbelievable as all of this still is to us. Danny never expected to be a heart transplant recipient when he was dreaming of his grown-up life. I never imagined to be the care-giver of a very ill husband at 37-38. Danny's parents never imagined that their son would ever be so ill. It's just unbelievable even though we face it day in and out. But what is awesome is that none of this is unbelievable to God. He gave Danny to Joe and Carolyn knowing what Danny's life would be like. He put Danny and I together and gave us our children knowing what we would walk through together. And He knows-in His infinite wisdom and love for us- what we can and cannot handle and He will never allow us to go through anything we can't handle and He never ever asks or expects us to handle anything alone. He is our strength and comfort. Our joy and peace. Our guide and conviction. He's a loving Father in every sense of the term. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i>No temptation has overtaken you that is not common to man. God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it.</i> 1 Cor 10:13</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Temptation refers to all of the struggles we face...true temptations like food, but also trials we face like death (</span><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The Greek for <i>temptation</i> and <i>tempted</i> can also mean <i>testing</i> and <i>tested).</i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I was telling my sister-in-law today how amazing I think she is. She is a single, independent, intelligent, professional, career woman. She travels internationally (alone many times) for business. She does her own taxes (truly amazing to me!!). She cooks, cleans, studies the Bible, takes continuing education classes to learn a new hobby she finds interesting. Though she would love to be married, she has not allowed being single to hold her back from amazing adventures in life. I drove across the border into Canada with my mom last year when she lived in Maine and felt uncomfortable being in another country without Danny...even though we were perfectly safe the whole time. I'm so dependant on Danny! If it's in the Lord's plans for me to learn to depend on Him in the same ways I depend on Danny, I can honestly say that I'm not interested at all in that lesson right now. I'm just going to be extremely grateful for every second I have with Danny and won't dwell on what life would be without him. Right now I can't see how I would be able to handle it, so I'm assuming God has many more years planned for Danny!!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny is still having a LOT of trouble concentrating. He got in trouble with the nurse for trying to do too much. Danny attempted to go for a jog and barely made it down the driveway without falling. The nurse really fussed at him and told him to think more in terms of Sudoku. Danny also cut the grass one day while I was at work (fell down three times in the process). I noticed the grass right away when I got home and immediately felt sick because I know how stubborn and determined Danny can be. I didn't tell the nurse about the grass because I knew how angry she would be...Danny promised me he wouldn't do anything that stupid again. When I went into the bedroom after seeing the grass he looked truly horrible. It was so hard to control my temper. I was so angry and scared!! I didn't have to fuss at him because he already knew how dangerous and stupid it was and was already in a huge amount of pain. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny is so frustrated that he can't think well. He wants to work so badly but is having trouble with the computer/developer stuff he is attempting at home. Thankfully (according to the doctors) the mental stuff (lack of concentration/confusion??) is 100% medicine related and will get better as he is weaned off of some of the meds over time. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny's work has been more supportive and helpful than I would imagine any other company in existence. My 1st grade students have had discussions about how girls cry for many different emotions...and the people Danny works for and with constantly bring me to tears with gratitude, humility, and joy!! </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Thank y'all!!!!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">As always, thank you for your prayers. They are not unfelt!</span></div>
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Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com3tag:blogger.com,1999:blog-1121395890353404410.post-29065159305827864912014-03-26T20:16:00.000-07:002014-03-26T20:16:04.742-07:00Trying for Normal<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I haven't blogged in a while because I've been so busy but I forgot that people actually read this for updates! For me, it's a therapeutic journal...Danny has been home for a couple of weeks and is slowly recovering. His abdomen is still red and "infected" looking, but he has no other signs of infection. The doctors truly have no idea what the redness is and don't have any more tests to try. So, we watch and wait. His heart biopsies are still showing no signs of rejection, but a new rejection determining test (done by bloodwork--called MAP) is showing slight rejection. Apparently it's a little more accurate than the biopsy and even though is shows slight rejection, I don't think it's enough to really worry about at this point. The doctors are still adjusting Danny's medicines regularly as routine blood work results become available. Though his incision is healing correctly this time, Danny still doesn't feel very good. Overall he is improving and getting stronger, but it's a slow process. Headaches, body aches, swelling, eye pain, fluid retention, mood swings, etc... I have gone back to work and am pleased to say that the Lord has changed my attitude and outlook on working. It's hard, but not the hardest thing in life and I'll be fine!! Maggie and Charlie are happy we are home. As would be expected they each struggled.struggle in their own ways with Danny and I being gone, but we are working through those challenges together. It's nice to have a parenting partner at home again...even if he helps from the bed mostly. :) </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Hopefully Danny will continue to slowly and steadily improve. It would be an awesome miracle if he never had rejection issues to worry about. I'm so grateful he's home. Thank you for your prayers and support. It has been such a blessing for us!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">~Tricia</span>Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com1tag:blogger.com,1999:blog-1121395890353404410.post-42976547410107243962014-03-10T09:56:00.003-07:002014-03-10T09:56:39.530-07:00Repeat mystery area<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">When Danny went in the hospital for the surgery to reopen his sternum, flush it out, and close it correctly we anticipated that he would be home a few days later. That surgery was on 2/27/14 and it is now 3/10/14 (11 days later). The doctors knew about the complication because of the inflamed, red area on the bottom of Danny's sternum. As unbelievable as it is, he has a new inflamed, red area and inch or two where it was before. The nurses and doctors are completely baffled. So far the bloodwork and cultures are testing negative for infections, but it's possible he could have an uncommon bug they are not testing for. His body is showing signs of a problem other that the big red area on his sternum. His temp has been a little higher than what's normal for Danny and his BP and pulse have also been high for him (at rest). So, even though the doctors don't yet know what they are dealing with, they do know there is a problem...and they are concerned. The doctor on call over the weekend for the heart team saw him on Saturday and took a picture of Danny's sternum (to send it to the surgeon who was out of town over the weekend) and Sunday when she looked at his chest her mouth dropped open. I would love to say that Danny and I are making a bigger deal out of this than we should be, but we aren't. It's not good to have had a heart transplant, a suppressed immune system, and then have a mysterious area that looks incredibly suspicious for infection. Danny had an ultrasound yesterday and just like the first time, something is showing up on the ultrasound, but they don't know what it is. Danny is still hopeful that it's a cool little alien friend living in his abdomen. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The doctors are still tweaking his pain meds trying to find the right one to alleviate his pain. They just came in for rounds and the thought is that it's fluid collecting again...or still, really. When they pulled out the chest tube the other day it was still draining but because his abdomen was starting to get red and inflamed again, they removed the tube to eliminate the possibility of it causing infection. I don't understand why if the chest tube was in and was draining why his sternal area started getting inflamed and red again in the same general area. I think they will put in a wound vac because the surgeon told us after this latest surgery that the next step would be a wound vac if necessary. Apparently they are amazing at stimulating healing. Danny's sternum is just having a really hard time healing and having a suppressed immune system makes it very tricky. They have to lower the immuno-suppressant medicines to enable his sternum to heal (and fluid go away), but if they aren't careful his body will reject his foreign heart. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">We don't know if they are just going to wait and see what happens or do something surgically (proactive)...but I do know they won't send him home until his pain is managed and they feel comfortable knowing for sure what's going on with his sternum/fluid issue. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">This is my last week with Danny before my leave is over and I have to go back to work. The kids have been struggling with the pressure of all of this and so I am going home at night and back to New Orleans during the day. If Danny is still here next week it is going to be awful not being able to see him during the day. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Though I know for sure that God is good and faithful, and I know for sure that He loves us and has not forsaken us, all of this is still very, very hard. I haven't learned those things through this experience because I've already learned them through previous life experiences. What I'm learning through this trial is that He is the perfect comforter. People try to comfort-and many do. However, some people are hurtful (unintentionally I'm sure) and that is so hard. When we are in survival mode, our feelings and emotions are fragile and vulnerable. I think maybe things that are hurtful to us now maybe wouldn't be in times of life when things are smooth sailing. Anyway, I'm learning to give that hurt to the Lord and allow him to comfort me and bring me to forgiveness. Forgiveness can be so tough and I'm not an expert by any means!! I am an open person who wears my feelings on my sleeves. God is teaching me and convicting me to take my troubles to Him first. He does use the body of Christ, friends, family...to support each other...but God should be our primary source of comfort. I hope I learn that lesson well through this time of trial. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Prayer requests:</span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny's fluid/sternum/solution/pain</span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Maggie & Charlie (God knows their needs)</span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Tricia: strength, learn God's lessons, work next week, parenting, support Danny</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Thanks and God Bless, </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">~T</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com1tag:blogger.com,1999:blog-1121395890353404410.post-59125747294966649462014-03-05T18:58:00.000-08:002014-03-05T18:58:06.535-08:00On the Road Again<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The song <i>On the Road Again</i> keeps coming to my mind... Danny and I are so ready to get back home again!!! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny is able to use the bathroom without trouble or pain now and he is sleeping through the night, which is something he hasn't been able to do in a long time. The amount of fluid his chest tube is putting out is still over the limit, so we are waiting on that to slow down a lot. If the tube is removed too quickly then the extra fluid may seep out through his sternal incision instead of being reabsorbed into his body. So, the best thing to do is to be very patient and let the chest tube do its job!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny is still using a pain pump that he will keep until the chest tube is removed. The good news is that when he needs the pump, it works...however, he doesn't need it nearly as much as he did in previous days. Danny will be transitioned over to oral pain meds with IV pushes for breakthrough pain when the chest tube is removed.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I thought the incision the surgeon did this last time was to reopen the bottom 6 cm of the sternal incision, but apparently I misunderstood. The surgical bandage was finally removed today and it's 6 inches, not centimeters. That makes more sense to me because I was having a hard time understanding how he could drain fluid, flush, scrape, and stitch in a 6 cm opening!</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Bottom 6 inches reopened...that's about half! <br />What's still covered is the chest tube exit site.</span></td></tr>
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<br /><br /><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny's arms look soooo sad...the slightest touch hurts.His veins are not cooperative anymore!</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Bruises from IV's and blood work</span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXpCW2Rs_pQlryZHbglLHzpqVjGRv_q4ni17T162EGiVuONdoHIc8qenrKm2KURYSoDqd3RJ4vaLE6dfRnUcwOQnRLhhAVbydJk_rcAiY7Eah3ETOkQboFhJUkCiNlx_g5eIZXYkaPx14/s1600/photo+4.JPG" imageanchor="1" style="clear: right; font-size: medium; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXpCW2Rs_pQlryZHbglLHzpqVjGRv_q4ni17T162EGiVuONdoHIc8qenrKm2KURYSoDqd3RJ4vaLE6dfRnUcwOQnRLhhAVbydJk_rcAiY7Eah3ETOkQboFhJUkCiNlx_g5eIZXYkaPx14/s1600/photo+4.JPG" height="640" width="480" /></a></td></tr>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">We try to go for several walks each day. It's kind of hard because Danny needs to walk to recover more quickly, but walking makes more fluid drain through the chest tube thereby keeping him hospitalized longer...</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Prayer requests:</span></div>
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<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Chest tube stops draining or slows down considerably</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Easy transition to oral pain meds from the pump</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Sternum stays closed tightly with no leaking</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The 1st three lead to going home soon!!</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Our children</span></li>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">God Bless,</span></div>
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<tr><td style="text-align: left;"><span style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Danny & Tricia </span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif1luhaUmyG821Hc6p8s4g-1KnpKq7VioNFRSRH8-3eYV5VeYHrem9iSzlKsLGXP1I9tHDAlzWmBf0jNCDgnEkSUMdUiJPgpAL8066XfRjjlCBlWuBBULcCu_EDOJPmurThpvYa6OERDA/s1600/couple.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif1luhaUmyG821Hc6p8s4g-1KnpKq7VioNFRSRH8-3eYV5VeYHrem9iSzlKsLGXP1I9tHDAlzWmBf0jNCDgnEkSUMdUiJPgpAL8066XfRjjlCBlWuBBULcCu_EDOJPmurThpvYa6OERDA/s1600/couple.JPG" height="400" width="300" /></a><br /><br /></td></tr>
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Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com0tag:blogger.com,1999:blog-1121395890353404410.post-54169084677451794902014-03-01T00:05:00.000-08:002014-03-01T00:05:04.955-08:00Persistence<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I admire Danny's persistence...I would have given up the battle more than an hour ago. After receiving a pretty good amount of IV fluids and drinking water orally, Danny finally feels the urge to urinate. His bladder feels full and despite his valiant efforts, so far nothing! This began at 12:00 am and it is now almost 2:00 am. I'm not sure what else he could do to force his body to urinate. He rotates between sitting, standing, bedside, bathroom, running water, silence, praying out loud, praying quietly...His pain medicine pump is now out of medicine and is beeping steadily and loudly. He refuses to call the nurse in to refill the medicine because then the nurse would do the bladder scan to know exactly how much urine Danny has, and then the nurse would probably have to do another in and out catheter...Danny (against my advice) is choosing not to call the nurse about the pain medicine being out and is absolutely determined to go to the bathroom on his own...even though that means he will be totally behind on pain medicine. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Persistence. Like I said, I would have given up already!! Clearly the catheter hurts pretty badly for him to give up pain medicine for now. The nurse told Danny he was going to give him until midnight to use the bathroom and then comes the bladder scan, a call to the doctor with results, and probably in and out! It's two hours after midnight and still the nurse hasn't come in. That means Danny is seriously running out of time!!! Who will win the battle of the wills...Will Danny be able to urinate on his own without pain medication? Or, will he be forced to give up by the nurse??!!?!?! Stay tuned...</span>Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com0tag:blogger.com,1999:blog-1121395890353404410.post-49585859474702875492014-02-28T19:32:00.003-08:002014-02-28T19:32:40.361-08:00After surgery day 1<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Last night and today have been long. Danny hasn't been able to urinate on his own yet and has already had one in and out catheter (put it in, drain bladder, take it out) at 4:00 am. Since then he still has not urinated (despite trying every trick in the book) on his own. They are giving him more IV fluids in addition to not limiting his oral intake in hopes to "jumpstart" his kidney. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny is on a pain pump with Dilaudid and he is requiring a lot to keep the pain down to a 6 or 7 out o 10...10 being the worst pain. Apparently many people would be knocked out with the amount of pain meds Danny is on right now. Throughout our marriage Danny has never really felt relief from typical pain meds, so his solution is to take nothing unless it's unbearable pain...and then it's when I'm making him because I'm worried about how badly he is hurting. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Anyway, the thought is that the Dilaudid is making his bladder "sleepy" and not give the signals needed for his body to urinate like it should. For sure this will work out and his urinary system will get back on track, but in the mean time they have to continue to do the in and out catheters to empty his bladder. The nurses have a bladder scan machine (like an ultrasound) that tells them how much urine is in the bladder. The in and out catheter is used if the urine is over a certain amount...Apparently the bladder can burst if it gets too full for too long!?!? That sounds pretty uncomfortable to use one of Danny's favorite words. :)</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">We are both exhausted from spending all night and day trying to help Danny urinate. The question was raised about how I would go about helping Danny use the bathroom...Well, hold him up when he's sitting or standing so he doesn't get too wobbly and fall, holding the urinal for him when he gets too tired, waking him up when he dozes off so he can keep trying, water running in the background, Hot water to dip his hand in, rubbing his back to help him relax, etc... We literally can't think of any other "tricks" to try so it's looking like the in and out will be happening again soon. :(</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">We went for a couple of walks down the halls today. He was pretty wobbly, but made it just fine. He may go home as early as Monday...the hold up will be getting his pain under control on oral meds. He wasn't sleeping at all due to pain prior to this hospital stay and the doctors really want the pain well managed before we go home. Pain is preventing Danny from sleeping and doing everyday chores/routines...and that wasn't the purpose in receiving a new, healthy heart!!!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Please pray that Danny's recovery would be so fast that no one could assume it would be anything other than the Lord. Pray for pain relief and perfect healing of Danny's chest.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">God Bless, </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Tricia</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com0tag:blogger.com,1999:blog-1121395890353404410.post-23219652466166121952014-02-27T04:34:00.001-08:002014-02-27T20:06:52.071-08:00Surgery Day<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">It's about 6:00 am and we just now found out some info finally! Dr. Bansal is hoping to only have to open up the bottom of Danny's sternum to remove the problematic stuff that's in there (Danny refers to it as his growing alien). If it's pus or infection of any kind--high probability I think...they will take a culture to be sure of exact bug so they can use the best antibiotic. In that case, he may be on antibiotics for about 6 months. Bansal may cut out Danny's zyphoid process (little, useless bone at the center, bottom of the rib cage) if it appears to be hindering the sternum from healing properly. Whatever he sees when he goes in, he is going to fix. Because Bansal isn't sure exactly what he is going to find, Danny had to sign all sorts of consents...two types of anesthesia, blood transfusion, and something else I can't remember. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I feel very comfortable with Dr. Bansal just doing what he needs to do to fix whatever is causing Danny's extreme pain. He is very detailed, picky, and demanding of how hospital staff cares for his patients. He's fun because at first one might get the impression that he is just difficult...but that's not the case at all. He absolutely cares about his patients and wants the best for them. Danny and I really appreciate him and know that the Lord uses him to perform wonderful medicine! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">All that being said...I'm feeling excited and hopeful about this surgery because I know that Danny is in good hands and will be on the road to feeling great soon! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I have no idea how long surgery will take, but the OR people have my cell phone # in case I'm not in Danny's room when they call. I don't know if he will be discharged today or if they will keep him a bit longer for pain management and/or observation. He's in the TSU (transplant step-down unit), so it's very much like being back at home. Transplant patients are like family around here...it's a very nice environment! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I'm going to blog throughout the day as more information becomes available. Danny and I are accustomed to being "fluid" (not knowing the plan and just going with the flow). That's the life of an LVAD/transplant patient. However, I realize that lots of people want the info ASAP so I will do my best!!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Thanks for prayers for an amazing surgery and recovery. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">~T</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">9:15 am...still no word from surgery. Just waiting patiently!!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">10:15...surgery over. Dr. Bansal came up to the room for the update. Danny did fine. He didn't have to cut the entire sternum open. The bottom 6 cm of the sternum is what was not closed correctly. That part wasn't wired shut (wasn't supposed to be). Stitches are commonly used in that very bottom part of the sternum. Danny had a huge amount of inflammation and fluid collection. Bansal removed and flushed out the fluid. He scraped (with a medical "sandpaper" in easy terms) the edges of the tissue on the sternum so it can grow back together properly. He put that bottom part of the sternum that wasn't joined together correctly back in place (like puzzle pieces) and used very tight stitches to hold them in place until healing happens. He didn't use wire there because if there is infection he wants the stitches to be able to dissolve without having to open him up again. They did not see pus, but are sending the fluid off for a culture. Danny was intubated for surgery, which he won't like...but on the other hand, whatever Bansal felt he needed to do I'm glad he did! I'm also very glad he was able to deal with the sternum as well as the fluid today. Bansal said that even though he sewed the stitches very tight at the bottom of his sternum, he wouldn't be surprised if that area started leaking again (that is the same area where fluid was literally squirting out of Danny's abdomen a while back...that was wild!! Here's a pic of that craziness... :)</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1DGxUK1zC-7VTKvKNOUDAMpeOiSWsyZQnlQxqvsHY5VYwemIlNrOVK9KrxrgVcEPMja9vzmXdU958A86QjCMaz2LThs-8xjjl_Ai9XxyVlrEnnnDgnrOQ5UMxX6jAtgcWcsxREJIrrs4/s1600/IMG_2290.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1DGxUK1zC-7VTKvKNOUDAMpeOiSWsyZQnlQxqvsHY5VYwemIlNrOVK9KrxrgVcEPMja9vzmXdU958A86QjCMaz2LThs-8xjjl_Ai9XxyVlrEnnnDgnrOQ5UMxX6jAtgcWcsxREJIrrs4/s1600/IMG_2290.JPG" height="474" width="640" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Bansal said it might leak because Danny has soooo much inflammation right now and once the inflammation starts to go down, the stitches may loosen...causing leakage. In that case, Bansal would put in a sponge vac, which is a sponge stuck to the leak and a vacuum type device on the other side of the sponge to draw out the fluid. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">He expects Danny to be in a lot of pain when he gets back to the room and they are going to give him a pain pump for while he is here. Bansal put in one drain tube (chest tube) and will remove it Saturday IF the fluid output is very low. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Bansal did remove a stitch from the LVAD that was missed during the transplant surgery. I don't know that the stitch caused problems, but why leave something in there that serves no purpose?! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Bansal wants the heart failure team to drop Danny's steroid level for a while so the sternum can heal well. The steroids aid in anti-rejection...which means that they try to stop the body's natural attempt to heal itself. Since a transplanted organ is not what God put in the body, the body knows that it's foreign and would automatically try to attack it. The steroids and other anti-rejection meds stop the attack. That's good...but the downfall of anti-rejection meds is that his whole body is now not doing it's natural job of self-healing. It would be cool if there was a medicine that only stopped rejection of the transplanted organ and didn't effect the rest of the body. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">So the trick will be to find the fine balance between a low enough steroid dose that allows his sternum to heal properly and high enough that his body won't reject the heart.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny isn't back in the room yet because it takes a while to be extubated. I'll update again when he gets back to the room and I know more!!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">~T</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">9:20 pm Danny got back to the room about 3 pm I think. He has been very groggy from the anesthesia and in and out of sleep since then. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBMOV3AK_9epuMCTI0rclrt4ty4vSj6nvZxDn4JB9v4XLhmIdBYVuh1JZa9bkcSKqV78mcXnv4hYdiC5eQcWTD1nWMGbO8hyphenhyphenqb1fSkkvreCx-ues0iknJrfn5MBjgh01MFT_h4t6abzlo/s1600/IMG_2435.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBMOV3AK_9epuMCTI0rclrt4ty4vSj6nvZxDn4JB9v4XLhmIdBYVuh1JZa9bkcSKqV78mcXnv4hYdiC5eQcWTD1nWMGbO8hyphenhyphenqb1fSkkvreCx-ues0iknJrfn5MBjgh01MFT_h4t6abzlo/s1600/IMG_2435.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">Using head rest as a splinting pillow to ease pain</span></td></tr>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">He is plenty silly when awake:</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">"I got this T for my T"...later it was his gladiator helmet!!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">When the nurse told him he HAD to urinate or the doctor was going to order a catheter Danny said "Now, remind me what that is...will that be pleasurable?" lol </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">"Hey Trish, see my lasso?"</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">"Come over here and tell me what the extracurriculars are all over my back." He had some stickers for the heart monitor leads still stuck on his back from surgery and this huge round bandaid thing over his bottom. I'm still not quite sure what that's for but when I went out to ask the nurse if it was ok to take it off, I started by saying "he has this big, round...". She finished my question with laughter and said "bandaid on his butt?...Yep, they didn't tell me that was still on, you can take it off. just let me know if it has anything on it."</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Front and back pic...I have no idea!!!!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">This nose flap this is just hilarious. It's a O2 and CO2 sensor for patients with pain pumps. If his levels aren't correct, the pump won't allow anymore medicine...So it certainly serves a purpose and makes sense, but looks absolutely ridiculous! Danny, the nurse, and I were all laughing. There's this unbelievably ridiculous show on TLC called Myrtle Manor we watch sometimes for a good laugh. The security guard for the trailer park has a "gostache" (a mix between a goatee and a mustache...not joking...) Anyway, this is Danny's gostache!!!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Though he is in a lot of pain at the moment, I'm excited that pretty soon he will be feeling better than he has in years!!!! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Will update tomorrow...</span>Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com0tag:blogger.com,1999:blog-1121395890353404410.post-57117030882133475462014-02-26T17:50:00.001-08:002014-02-26T20:13:22.274-08:00Back in Ochsner<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The nurse called us yesterday and told us to go to admitting at Ochsner between 2-3 pm today. They are admitting him tonight for observation and pre-op prep for surgery tomorrow. We don't have much information yet about what's going to happen tomorrow. The nurse told me that there are two issues...the first that needs to be corrected is the mysterious problem they see on the CT. It's either fluid/pus/or infection trapped toward the bottom of his sternal incision and they believe that's the cause of the majority of his pain. The second issue is the non-joining of his sternum. We (or the nurse) doesn't know if his sternum will need to be re-broken to heal properly or if the removal of whatever fluid type stuff is trapped in there will help the sternum to heal properly on its own. We just now got in a room (7:15 pm--sat in admitting since 3:30 pm) and haven't seen the on call doctor yet. He or she may or may not know details of the plan for tomorrow. The good news is that the surgeon doing the surgery tomorrow knows exactly what's going on!!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Ok--so the doctor on call tonight just came in and has no idea what the deal is. He's going to call the heart team and tell them Danny's in a room and see what needs to be done tonight. As frustrating as it is (not really for us because we are used to it), I can tell this is going to be a "fluid" hospital stay. We probably won't know what's going on until tomorrow morning...or maybe not!! None of that maters to us very much. We are just grateful to be here and the surgeon will do something tomorrow to begin to solve the problem!!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I will post again when I have more info...Pray for doctor's wisdom, successful surgery, pain relief, information for us so we can tell family... thanks! ~T</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Now it's about 10:00 pm. An anesthesiologist just came in to get release signed. He had no idea what type of surgery Danny is having...all they know is who the doctor is so they don't ask questions. He had Danny sign releases for 2 types of anesthesia so they're prepared to do whatever they need. Then a heart surgeon on call came in and said surgery is at 7:00 am but that's really all he knows. He's not sure if Danny's sternum will need to be broken open again for this surgery or not. So all we can do is wait and see what the surgeon finds tomorrow!! We really like this doctor and feel very comfortable with whatever he needs to do. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">D will have pre-op tests and labs throughout the night tonight...</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Will add more when I know more!! ~T</span>Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com0tag:blogger.com,1999:blog-1121395890353404410.post-17977381424140070072014-02-24T20:16:00.000-08:002014-02-24T20:16:46.444-08:00Mystery complication solved<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny and I went to New Orleans today and saw the doctors. The surgeon was able to look at the actual CT film today (Danny had the CT done in Baton Rouge so Friday the doctors were only looking at a digital image) and identified the source of pain without needing an MRI. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny has a surgical non-union of the sternum. In simple terms that means that after the transplant his sternal incision did not heal correctly. Apparently this is not a RARE complication, but it isn't a COMMON one either. It's somewhere in between. The surgeon who did Danny's LVAD (unfortunately he was out of town the day of transplant or he would have done both surgeries) is going to repair Danny's sternum. The doctors also think there is fluid trapped inside of him, which could likely hold infection. We are not yet sure when the doctor is going to be able to surgically repair his chest but certainly hope that it's soon as Danny is in excruciating pain. The nurse is going to call tomorrow to let us know the plan. We aren't happy that his chest incision didn't heal correctly (either by error or by no fault), but are happy that the doctors see the problem and will be able to fix it. I would imagine that the recovery from surgery #3 will be faster and easier than the first two.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I will update tomorrow when I know more details...</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Thanks for being faithful to pray for Danny and our family!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">~Tricia</span>Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com0tag:blogger.com,1999:blog-1121395890353404410.post-59901058717812447892014-02-24T09:31:00.001-08:002014-02-24T09:31:28.055-08:00Complication?!<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny has been having excruciating chest & abdominal pain along his incision. The pain has been there since his transplant (12/17/13), but up until fairly recently we thought it was normal pain associated with two open heart surgeries. There is significant bruising along the incision, specifically at the bottom and a little at the top. We have told the doctors and nurses about how much pain he is in and up until last week we were told to remember that Danny just had his chest cut open twice and it's a marathon not a sprint. Last week their feelings changed and they became concern about the way his chest looks and his level of pain. He shouldn't be hurting the way he is at this point! Danny had a CT last Thursday and the doctors reviewed the results on Friday. Apparently something was visible but they could not agree on what...Two surgeons, a couple of the doctors on the heart transplant team, & infectious disease were all arguing according to the nurse. They decided that Danny should take Advil around the clock, begin an antibiotic and go to New Orleans Monday for an MRI. MRI's show soft tissue so whatever the problem is, it should be visible. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">We are now in New Orleans waiting to be seen. The surgeon (the one who did the LVAD) looked at the CT films this morning and has spoken with a cardiac doctor. We will see her in about 30 minutes and she will hopefully be able to explain what the problem is. Last week, before the CT, the surgeon was thinking it was incisional hernias and thought it would be easy to see on a CT. If that's what it is, I have no idea why they couldn't figure it out on Friday. Anyway, we are anxious to see the doctor to find out what is going on. Our prayer is that there is something wrong that can be fixed. The alternative would be seeing a pain management specialist with the worst case scenario being something like a Morphine pump...that would be terrible!! Danny just needs relief from this severe pain...last week the surgeon was upset and said "we gave him a new heart which is working great, but because of his pain, he can't even use the heart!!" That's exactly how Danny feels...At this point, he felt better with the LVAD, which is pretty bad because he did not enjoy that part of this journey at all!!!</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The bruising/redness at the top and bottom of his <br />incision is where his pain is located.</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Last week Danny had a left heart cath (angiogram). They went in through the vein in his right wrist and fed the tube all the way up and over to his heart. They check for any plaque or problems that his new heart might have to serve as a baseline for comparison with future routine tests. He is soooo tired of being poked..but very grateful and blessed for modern medicine!!<br /><br /><br />In addition to praying for Danny, we have an unspoken prayer request...It's not something I want to share publicly, but certainly the Lord knows what we need and will understand your prayers!!! Thanks~T</span></td></tr>
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<br />Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com0tag:blogger.com,1999:blog-1121395890353404410.post-78435486943085980322014-02-06T09:08:00.002-08:002014-02-06T09:08:52.412-08:00Long time, No Post!!<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Well, I've dropped the ball and haven't blogged in a while. We were sent home from the Brent House (hotel attached to Ochsner in New Orleans) last week when a big (for Louisiana...lol) ice/snow storm was predicted to come through. The hospital was cancelling and sending home as many non-critical patients as possible. We were still in New Orleans awaiting another biopsy, a left heart cath (he's never had one of those--only right heart caths), and some other tests before the doctors were going to release us to go home. The nurse called us at about 5:00 pm to tell us to go home and by the time I packed and loaded everything, it was almost 7:00 before we left Nola. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">We surprised the kids and they were both so excited when Danny and I walked in the door. Snowball, the dog, was hysterical with happiness. It took a few days to get the house back in order and I've been completely exhausted with that and just getting back into the routine of being a mom and house keeper. Taking care of Danny is a full-time job in itself because his medicines (and snacks) occur all throughout the day and his pain is still not good. He's still having a significant amount of incisional pain and some pretty bad pain on the right side of his chest--located sort of opposite his heart. Danny has mentioned the pain to the nurses when they call to check on him, but they say to remember that he's had his chest cut open two times in the last four months and pain is normal. So, we've just been trying to manage the pain and cope. Danny had the transplant 7 weeks and 2 days ago, which seems kind of unbelievable! Probably two weeks ago, the bottom part of the chest incision began swelling and bruising. That's also where the extreme pain is located. We've been trying not to worry about it and keep reminding ourselves that he's had two open heart surgeries, but often times the pain is disabling for him. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">He still spends much of his time in bed. I try to get him out at least once a day but that doesn't always happen because he doesn't feel well enough. He is also very shaky and still falls down, though the falling is less. Some days his shakiness is so bad that he can't eat soup or anything liquid really. The shakiness is a side-effect of the medicines as is the extreme pain in his extremities. I don't think he usually hurts in his arms and legs at the same time, but it's always either one. they burn (like a fire coming from inside his bones), cramp, and ache. He asks me to rub his arms/legs but then cries because touching him hurts. Apparently these medicines always have some pain associated with them, but the severity Danny is having is not a common. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Yesterday the surgeon that did the LVAD (a different guy did the transplant because the first guy was out of town that particular day) called me to check on Danny. When I told him about the pain, swelling, and bruising he wasn't happy. He wasn't surprised to hear about the side-effects Danny is experiencing in his extremities, but was surprised about the incisional issues. He wants to see Danny when we are in New Orleans next for testing to check the incision and told me to call him immediately should any chest symptoms worsen. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">On another note... a few days ago my dad, some friends, and I teamed together to move a really heavy armoire in our house. During the move, the mirrored door (which is the heaviest part of the armoire) fell on my friend Kelsey's big toe and my foot. I assume the corner landed on her toe and the side of the door landed on my foot. Her toe is broken...it's split from the tip to the knuckle. My foot is not broken, but is badly bruised and swollen. I feel so terrible that she was hurt and wish it was my toe instead of hers!! Anyway, now Danny and I are in this weird predicament of trying to take care of each other. I can finally walk without excruciating pain, but shoes are still not my friend! On a positive, the armoire did get completely moved and reassembled, and looks beautiful in its new spot--where it's staying forever...</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny has a personal goal of returning to work at the beginning of March. Hopefully the doctors will sign off on that plan. Thankfully, software developing is more brain exercise than physical, so he should be okay. The trickiness will be keeping Danny away from sick people. Danny has to wear a face mask anytime he is outside of our home for at least a year. In addition, he isn't supposed to be around anyone who is sick. Having a suppressed immune system isn't something to take lightly! I don't know the logistics of how he will manage working around other people who may be sick, but the company he works for is amazing and has already done more for us than we could have imagined, so I know returning to work will be okay too!! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Baton Rouge has had 3 snow/ice days in the last couple of weeks...This is how south Louisiana kids dress for snow~HAHAHAHA...that's an icicle in Maggie's mouth!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">It's great to be home again with these two kiddos... :)</span>Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com1tag:blogger.com,1999:blog-1121395890353404410.post-88380349536950801412014-01-17T10:02:00.000-08:002014-01-17T10:02:14.349-08:00Emotions<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Yesterday and today (so far) have been fairly emotional for me. Yesterday, a pastor and a member of a church of which we don't belong came to visit and pray with us. To drive to New Orleans for people they don't know is such an expression of God's love and I am humbled and overwhelmed! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">When Danny had the LVAD, we had direct contact (direct phone numbers) to the doctors and nurses on call. Both Danny and I were in the clinic on a regular basis and the staff was very involved with how he was doing and feeling. They also placed a lot of emphasis on the role of the caregiver and therefore included me in all discussions and visits. A large emphasis was put in the area of social work because the pressure on an LVAD patient and his/her caregiver is enormous. The social workers were incredible and both Danny and I truly appreciated the wonderful conversations we had. She cared about how Danny was doing, but also cared about me. We were spoiled...The team of doctors is the same now that Danny has had a transplant, but the nurses and coordinators are different ladies. Danny was discharged from the hospital (to the Brent House Hotel connected to Ochsner) on 12/31. If I'm not mistaken, he has been seen in the clinic one time since then…and that's when we called because fluid was squirting our of his chest incision. The nurse that is assigned to Danny's case while he's here in New Orleans does call him at least every couple of days--and sometimes daily to check on him. He does routine blood work in the lab at Ochsner, which the doctors and pharmacists follow closely and then the nurse calls to change medicines as needed.(which is often) We were told before being discharged about specific problems to call immediately for--to include if he feels anything that's not the same or just feels weird…He body can (and will according to them) reject at any point and any tiny change can indicate rejection. The nurses told me to be very aware of how he is acting/feeling because I will probably notice changes that he doesn't that may be an indicator of rejection. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Again, totally spoiled. I've only met the nurse the one time he was in clinic. Danny has had pitting edema in his ankles and feet for a couple of days now and his blood pressure has been running higher than it should be. These are issues that would have been caught already when he had the LVAD because they spoke with both of us often and returned calls immediately The truth is that the patient doesn't always give completely accurate information for whatever reason…which is why it's important to have the care giver present. Danny didn't call about the edema two days ago because even though he knew I was concerned, he wasn't. I had a minor melt down last night because his legs and feet were close to the same width from his knees to his toes--which is a LOT of fluid retention for Danny…he's a skinny man!! In his effort to "fix" my "meltdown", he paged the doctor on call (who was happy to hear from him.) She wasn't pleased with his edema and told him to call the clinic first thing this morning. He has left two messages from the nurse so far, and it's 11:31 and she still hasn't called back. I'm not feeling happy! Honestly, if it is so vital that we stay within 30 minutes of Ochsner for 6-8 weeks after transplant, why aren't we able to talk to the nurse when we feel there is a problem? </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">If I'm honest, I'm feeling sad because I'm not intentionally included in his health care…by that I mean the nurse just talks to him on the phone (on her terms apparently) and doesn't see him in clinic when I would be with him. I"m sure that's because he is doing wonderfully (overall) and they don't need to see him. So I feel like maybe I'm feeling sorry for myself because I'm not included…shame on those LVAD people for making us both feel so special!!! :) Anyway, it's hard and I know it seems selfish, unimportant, etc… Also, LVAD's are meant to be a bridge to transplant meaning the idea is to only have an LVAD for months-a couple of years at most while waiting for transplant. A transplanted heart has a life span of longer than that so it makes sense that the level and type of care we receive would not be as intense and "special" as it was for an LVAD. It would be super hard for the staff to give that kind of attention to patients and their caregiver for a long term thing. Still…I'm sad! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">While I'm typing this, the nurse has called and Danny has asked many good questions. I'm excited for him to get off the phone and fill me in with the details. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Details: </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Swollen legs and ankles: He is okay as long as in the morning when he wakes up the swelling is down some. If he wakes up and they are just as swollen, it's a negative and dangerous indicator that one of the immunosuppressants is not as a correct dosage. If the swelling persists over night, it indicates that blood vessels are bursting in his legs. But…that's not happening, so he's okay.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">She said to remember that he's been through two major surgeries in the last four months and his body is all out of whack. The fluid will figure out were it's supposed to be at some point. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Blood pressure: The high BP is a result of a medicine that they were changing the doses for frequently…it takes a while to determine the best dose for each patient. According to blood work, they feel like they've found the best dose for Danny and therefore his BP should stabilize over the next couple of weeks. They may go ahead and give him a short term BP medicine to help him feel better quickly…they haven't decided yet. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Going home plan: Depending on the biopsy next Tuesday and labs, we may be able to go home next week! They won't have all results back in until Thursday probably, so I wouldn't think he could leave New Orleans until Thursday or Friday at the earliest. Again…that is completely dependent on good results!! yaaaaaayy and scaaaary!! We know from experience that it's hard to leave the safety and comfort of being in the hospital. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">So, my concerns have been addressed and I feel better about that. And, it's okay (and good) that I have to lean on the Lord for my comfort when I'm scared and lonely--who needs nurses and social workers!!!! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">~T</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>Anonymoushttp://www.blogger.com/profile/01536296324165413262noreply@blogger.com0tag:blogger.com,1999:blog-1121395890353404410.post-18992992645029558622014-01-15T21:47:00.001-08:002014-01-15T21:47:11.387-08:00Barber Day<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Today began with labs and then a visit to the barber. This hospital & hotel feels like a small (very small) city…2 cafeterias, tons of vending machines, gift shop, pharmacy with shopping, barber, beauty salon, fitness center, PJ's coffee, art shows, live music…Today the labs went better than they have been because they only had to stick him once and no veins blew out. He decided to use his right arm today..he hasn't been using it because of the major bruising and pain he had. It;s taken almost 3 weeks for the bruising on that arm to get better.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The medicines Danny's on are so powerful…the side-effects are unbelievable! He has severe mood swings, weight gain, fluid retention, extreme hunger, exhaustion, shaking (often difficult to get food into his mouth). His legs and arms feel like they are on fire from the inside and there's not a way to make that go away. That particular side-effect is from the Prednisone. In 18 years of being married, Danny has never once wanted massages but now his body hurts so badly that he would be happy if i never stopped! He was telling me yesterday that one part of the struggle he's having is the balance between being absolutely grateful for the gift of his new heart, but not always feeling "woo hoo!! happy" because of the amount of pain he's in. He feels like people will perceive him to be ungrateful to some extent if he is honest about how he feels physically. He can definitely tell a huge improvement in his heart function--breathing and chest pain--but I know he won't feel the full extent of the blessing that his new heart is until he is much more recovered from the transplant. The nurses and doctors tell him all the time that this is a marathon, not a race, and it will be a long recovery. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">So far, all biopsies have been negative, which is pretty amazing apparently. God is so good…and we know that He is answering the prayers of so many…THANK YOU FOR PRAYING!!! The doctors and nurses expect his body to reject at some point. It would be unheard of for it not to…I say lets pray about that too ! They also said that he needs to be prepared (mentally) to be in the hospital once a week for the rest of his life for rejection or other complications…wow…God can handle that too! How can someone prepare for that? That's not leading a normal life at all. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Danny's blood work hasn't been right this past week and they have been changing the dose of one of the immune suppressants a lot. It can get to a toxic level in the body easily so they watch it carefully. The problem is that the results are not able to be seen in the bloodwork for about 2 weeks, so it's a lot of thinking and planning for the doctors and pharmacists. The immunosuppressants and Prednisone effect blood pressure, so that has to be monitored carefully also. He's not on BP medicines yet, but I think that's in the future. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I know I've said this before, but writing this blog helps me to process and cope with information…so I repeat myself. A high concern for heart transplant patients is not necessarily related to heart problems, but all of the other problems that can result from a suppressed immune system. Various types of cancer, viruses, and other things. That's an area where we just really have to do what God says and take those thoughts and worries captive and trust Him with our fears. We must not worry about tomorrow, but rather be thankful for today. On hard days where things are just wrong…a good habit is to write a list of what we are thankful for. There are always blessings to be found. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">He's "blossoming" is what the staff here says… :)</span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">I was already "blossomed!!!!" </span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Looking good-healing nicely!</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">Not happy to wake up for early <br />morning vitals and meds :)</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I think his puffiness is cute, but he's not loving it!!</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Trying to avoid a picture :)</span></td></tr>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The pharmacy downstairs sells a bunch of relaxing, lavender products and sets. I look at it all the time but never buy any because I'd rather buy stuff for Danny or the kids. Look what I got in the mail from my aunt!!! It's even from the same company in the pharmacy…yaaaay!! (Danny likes the heated neck wrap…I would have never imagined that!!) She also sent some tulips, which are beautiful! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-large;">We've gotten gifts, cards, emails, prayers…we are so blessed by so many people. Thank you!!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-large;">~T</span><br />
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